NEW YEAR'S EVE - OUT WITH THE OLD ?

Life is what happens while you're busy making plans

New Year's Eve is the most terrifying day of the year. It's a time to take stock of what you have and what you have achieved. It's a time to look forward to what you want and what you are planning for. It's a time to miss those who are no longer with us.

That strange and mournful moment when in the height of celebration they always put photos of those who have died that year on TV with a suitably heart tugging lament. You stand,glass in hand, and stare at the faces and every now and then break the silence to say, "Ooh I didn't know he'd died, " or " I thought she died years ago." Time stands still and then the year moves on. It has to.

Our little Tinker will not have her face on TV tonight on that list so I'm sitting here trying to write something that acts as a reminder and a celebration of her life.I'm sitting here trying to remember how she felt, how she smelled and how she smiled.

Estella was born and died in 2011

We know that when the year changes tonight we lose 2011 and it becomes memory. All around people clink glasses and kiss and hug and smile and welcome the New Year. Maybe some people still lock somebody outside of the house at one minute to midnight and get them 'first footing' when the bells chime- carrying coal and bread and the hopes and fears of all the years into the home.Hearts are beating with the excitement and anticipation and the plans of the days that are to come. Skies ignite with crackled , rainbow shimmering fireworks and the planet spins and the world turns around and around and around

How do we say goodbye to Estella's year ?

How do we say goodbye to the year that brought us our greatest happiness and our deepest sadness ?

How do we say goodbye ?

How do you catch a moonbeam in your hand ?

When a child is born there are so many expecations. So many new lessons. You walk around and exist like sleep sacrificed lurching drunkards as you try to make sense of the new routines and the deprivation of all the liberties you once knew. But somewhere in the foggy madness there are moments. There is the time I cradled Estella in my arms walking the floor and realised that by singing to her and rocking her at the same time while slightly shaking your arms you could make her stop crying and she would look at you with relaxed eyes and beautiful silence. And then when the singing stops and the rocking finishes she starts crying again and you have to start all over. 

There were times when at night we would take her into the big bed and lay her between us and by moonlight I would look at her beautiful peaceful face relaxed to be with her Mummy and Daddy and I would know that all life lay ahead of our perfect Tinker. The dresses and the parties and the Christmas tinsel eyes and the dancing and the singing and the school plays and the snowballs and the bicycles and the sand dunes and the crab fishing and the nights mopping her brow because she had caught a cold and .. and all of the beautiful golden moments that time gifts us with. There were nights when I lay looking into those eyes and just knew that she was Daddy's girl and she would never be alone or afraid or upset because we would always be there for her. Our darling Tinker - in the big bed - in our future and in our smiles. Moments of perpetual joy and heavenly devotion.Moemts of relaxed and perfect tranquility. Moments

And now those moments are gone and  there are gaps where Estella used to be. Her toys and her outfits are all packed away. Her cot is dismantled. Her Moses basket is in a cupboard. There is a space in the middle of the big bed where she will never lay again and my arms are empty as I look at the places we stood and the places we touched and the places we dreamed. The places we will never see blessed with her smile again. Broken dreams. 

 I cannot look down to this floor, but her features are shaped in the flags! In every cloud, in every tree - filling the air at night, and caught by glimpses in every object by day - I am surrounded with her image! The most ordinary faces of men and women - my own features - mock me with a resemblance. The entire world is a dreadful collection of memoranda that she did exist, and that I have lost her!

How do we say goodbye to Estella's year ?

The answer - of course - is that you can not. I know enough already in these seven short weeks since she died to know that she never leaves. I know enough already to know that the places where I held her are not filled with regret and I am already drawing memory and happiness from the deepest wells of sorrow. There are moments of absolute despair - moments when you really think that your heart is yearning and aching so much that it will shatter into a thousand pieces at the desire to touch her and to smell her and to kiss her. In those moments you become a wild animal and all emotion is raw and naked and stormlike - you are nothing but desire and regret. You are a parent on their knees to the cruelesst of storms. Those moments pass and there are gentle, reflective moments of pure tranquility and grace when you see her without the tubes and the machines and the breathing apparatus. You see her as the child you rocked in your tired and aching arms. You see her as ... as Estella.

The answer of course is that you never say goodbye. If all of her life was lived within an artificial construct we call 2011 that does not mean that she is left behind as we move towards something we call 2012. It means that the distance between holding her and the moment that is now is greater but there are times when that distance is only a heartbeat. There are times when we know she is with us and we know we can feel the spirit and the promise and the glory that was our darling little girl. Oh there are times...

The answer, of course, is that we reflect on some of the wonderful things that Estella brought. I will give you one now. If you think we loved Estella then you should have seen her with her Grandparents. I don't think I ever understood the nature of that role before. Estella had Maria's parents from the day she was born and I have never seen such pure, unconditional love. They loved her from the start and when she became ill they were the two people who got us through that impossible journey. We have been devestated by losing Estella but in many ways they have been hurt even more. They have seen the Tinker say goodbye but they have also seen the pain and the loss that their daughter has been through. I have never seen two people handle a dreadful crisis with such dignity and care and devotion as Estella's grandparents. They are the most wonderful people I have ever met and they miss her every minute of every day. They are strong for us but they are grieving with a loss beyond loss and tonight will be hard for them too. Amid the loss and the sadness though they still smile and laugh at thoughts of Estella. Bless them. Comfort them. Thank them.How can she ever be gone while they are still loving her.  

The answer, of course, is that Estella is not out there spread as ashes by tree and by fountain. She is not imprisoned by time or the constraints of space. She has become the most beautiful thing of all. She has become a traveller who can now walk and run and even fly. She has become all of the things that her poor body could never allow her to be. She has become nature and she has become time and she has become - free.

What she has not become is mere memory. What she has not become is somebody or something that we can not talk about or think about. Those of you who are parents must know that as I sit here writing these rambles my eyes stream with the most dreadful tears and my heart rises and falls with the passion of loss but it is as if these tears that fall on this clicking keyboard are vestiges of Estella freeing herself from my thoughts and appearing on the page. She can never become a memory because she is as real to me now in this room as she has ever been and as she will ever be. She is with us every morning and she is with us every night and there is no space in the middle of the big bed because that's where she sleeps at night . There are no gaps and there are no goodbyes. 

They show the faces of those that have passed at midnight. A reminder of our own mortality. A momentary pause where we know that life is short, time is fleeting and our pasts and our futures are all the same. Tonight when that happens we will think of Estella - not because its a special time - not because its a special moment but because, quite simply, because we always think of Estella. She is in our minds always. She is in our hearts always. She is in our hopes always and she is in our arms - always.

There is nothing terrifying about New Year's Eve. There is nothing to fear. There is nothing to lose not when you have already lost everything. There is nothing tragic though about New Year's Eve if you have not lost everything and we - I promise- have not lost everything. Why ? Because we still have Estella.

We still have Estella

Happy New Year Tinker - see you on the other side



                                                                                                                    





AND THEN WINTER CAME

We always said Estella was a Summer child so it was obvious she wouldn't stay to see snow.
She was born in Seville, where oranges grow wild on the streets and all you can smell in the Spring is orange blossom. The day she came into the world was sunny, and warm. It was a massive thing as she was my parents' first grandchild and they had been working more than 25 years in the hospital she was born, she was everybody's child. Presents, flowers, embroided bibs, cards... you name it and she had two :)
We had 8 weeks of happiness, 11 days of future in uk, and then the diagnose, and then the choices. And we chose, I chose. To live Estella's life with a smile making each day count, to start writing a blog full of hope wishing for a miracle, to grab each second of her life and make it meaningful. In that way this blog was born as Estella, happy.
I remember in the hospital the jokes with the consultants "C... are you going to section me today?" because most people thought I was in denial as I wouldn't stop smiling, even once I had to explain that was my choice as I would have time to be sad for the rest of my life.
And one November afternoon the rest of my life arrived. Estella died in my arms while I said to her how much I loved her. 8 months 19 days of wisdom, happiness, goodness. And I learnt I don't have the rest of my life to be sad, I choose to keep on smiling to keep on going. The days of fighting for my daughter's life are over but not the days fighting for other kids' lives, and their families, and my own family. My parents who lost their only grandchild, my husband and myself.
I choose, as I did that time months ago, love and laughter to honour Estella's life and all she taught me, and, once again, there are dear friends who want to section me because they think I didn't come to terms with the lost.
I did and I choose not to loose the smile.
This blog doesn't intend to equal Tom's, he really can write, I'm just a mum trying to make sense of the nonsense of SMA.
And I believe we can win the war. I believe we can SMASH SMA. Maybe this deserves to get me sectioned, after all one of my favourite movies is One Flew Over the Cuckoo's Nest.

99,233 signatures to go x

WHAT THE DOCTOR ORDERED

Watching the Christmas episode of Dr Who was struck by a quote. No spoilers in case you have not seen it but it described how we tried to live our days when we knew that whatever we did Estella was going to die. How could we act normal or enjoy time with her ? Here is the quote.


"What's the point of them being happy if they're going to be sad later? The answer of course, is that they're going to be sad later."

Thanks Time Lords everywhere

CHRISTMAS CHEER

As a child I always used to love snowglobes. I remember having one that had a miniature Dickensian village inside. I would shake the crystal and then press it close to my eyes to watch the snow fall on cobbled deserted streets. Cold crystal echoing beauty into my developing sensitivity. One of my favourite Christmas memories. I would hold the snowglobe so close and watch the swirling maelstrom settle into a beautiful and unique restfull panorama. Because I have such bad eye sight the globe would be held so close until all the rest of the surrounding world became the blur and there was nothing but the snow and the miniature and the dreams. The reality was the storm. The world danced by.

During the last few months that snow has been swirling around and around and all of my focus has been on the thousands of snowflakes that made up our journey with Estella. So many messages and signs and hopes and forebodings and so many moments whirling around that sometimes you could not see the storm because of looking at the flakes. Dizzy and aprehensive - snow blind. Looking for footfall paths and solutions. Every snow flake is unique and their symmetrical beauty compunds to become the drift that settles on enchanted branches. Lost in confusion - troubled by time.

Its Christmas Eve now and its time to see how the snow has settled.

Christmas Eve. The day that was always so important to me. No exaggeration to say that I saw the magic of Christmas Eve. I believed in the dark night choir song and the ice crack sleep that left the world white and crunch snuffled under snows that drifted forever. I believed in the expectation and the beautiful mystery of the muffled silence. I believed in teh Silent Nightand the voices of Angels.

So what can I believe now ?

It aint Christmas if there aint no snow ?

One of the things that people dont understand about what happened with Estella is how she lived her life. We get so many messages from people sorry for her pain and telling us that she is not suffering any more. People are so kind but I wish I could take them into a room and show them Estella.

I will try.



One of the things that you have to understand about SMA is that it limits the body. It does so much harm and attacks movement and swallowing and breathing. We watched Estella change daily from a baby that loved splashing in a bath and held a rattle almost from birth to a little girl who could move only her hands to grip your finger. The thing to keep in mind though is that inside her head there was nothing wrong. More than that - SMA children overcompensate for their lack of movement with improved intelligence and sensitivity. When we first heard that we thought it would be part of the pain to see an agile mind trapped in a body that would not respond. To be honest it was my major fear. Would Estella be screaming inside and unable to tell us ?

It was the exact opposite.

Estella developed a way of communicating with her eyes and her eyebrows that defied all sense. If a Nurse was the one who administered any treatment that she did not like she would remember that Nurse and look at her with such steely eyes that she soon knew she was not wanted. If you dared to step between Estella nd her programme on TV ( In the Night Garden ) then the raised eyebrows and the look of defiant consternation would soon tell you to move. She could communicate alright.

One of the most heart rending memories I have of Estella is that sometimes when you sat by her and talked or sang or told tales there would be a single tear that would well in her eye and fall onto her rosy cheek. She could not cry to make a sound and her tears would come in this way. It was never through pain though - I believe it was because she would see me in pain and she knew that I was hurting.

And thats the truth. She was the most sensitive, loving and caring person I have ever met. I would think that I was a very biased and confounded Daddy who saw things that were not there were it not for one thing. The support that Estella has managed to gather since she passed away has been so unbelievable that it denies rational explanation. The only way you can see why it happens is by looking into her eyes. When you do that I know that I am not talking crazy - there genuinly is a wise, knowing, pedantic, cheeky and charismatic soul there.

Somehow within a few months she seemed to develop an understanding of what was happening around her. Please believe me when I say this because its the most important thing I can ever say about my daughter. Maria looked after Estella 24/7. I contributed with some songs and some entertainment

but

Estella looked after us.

There were times when we saw her turn blue. There were times when we saw her turn bleached white. There were times when we saw her eyes roll up into her head. There were times when it was so obvious that we were losing her - right there - right then. We would panic and mend and try and cry and hearts raced and then... the little tinker would suddenly come back again. And when she did we would be on our knees and breathing as if there was no air - and then.. and then the little Tinker would laugh and smile. She would look at us with those liquid compelling eyes and smile. She stayed for us because we were not ready.

I have mentioned elsewhere how Estella left us and believe it or not this is meant to be a Happy blog today so I will simply remind you that we always said that when she was ready to leave she would tell us. I was at the shops topping up on baby products and she fell ill but she waited. She waited until she was in Mummy's arms and until I was there by her side. She waited until we were ready and both told her that if she was tired she could go to sleep with our blessing.

Did Estella feel any pain?
Only when she saw us unhappy.
Did Estella suffer ?
Only when she saw us suffering.
Did Estella have a sad and horrible life ?

No

I'll show you Estella

She was an absolute bugger of a tinker who knew very well how to melt her Daddy's heart.
She loved poetry and stories and music and games
She danced with her Mummy every morning
She loved physio with her Grandma
She loved her Grandad beyond words and beyond time
She had favourite toys
She would get angry if you fussed her too much
She would fall asleep whenever I sang Horse with No Name
She did paintings with her fingers and toes
She looked straight into the camera
She looked straight into your heart
She tasted banana
She went to the theatre to watch one of Daddy's plays
She went on an aeroplane
She stroked a skunk and had a row with a meerkat
She rolled off the settee and fell on the floor when she was not supposed to be able to move
She woke up every morning at 3 to get into the big bed
She had a wicked smile
She won the heart of everybody who met her
She managed to get equipment for Bluebell wood by making a video
She had far too many clothes and far too many toys
She loved The Cat in the Hat and would raise her eyebrows at exactly the same places
She could grip your finger until it hurt
She loved lights and sounds
She loved watching Fantasia - mesmerised by the orchestral dreams
She saw fireworks
She dressed as a skeleton on Haloween and smiled as I bobbed for apples
She dressed as Supergirl
She went to Spain
She convinced a milk company to give £ 25,000 to a charity
She flirted with Stephen Fry
She had some good friends - all of whom are now playing with her
She had the prettiest eyes
She made people laugh at her funeral which was attended by Iggle Piggle and a Baloon Bender

She waited until we were ready before she said goodbye

She waited until we were ready

She absolutely loved her Mummy - beyond all words - beyond all time

She was my tinker


So there you have the settled snow flakes. The parts of Estella that remain in our hearts.The storm ceases to spin and whirl and the houses and streets of the snow globe lay still and blessed and holy. The calm surrounds us and we see crystal clarity and pure beauty. Settled.

It wasnt a bad life

Its Christmas Eve and I am sat thinking of the most amazing soul I have ever met

Its Christmas Eve

Its not a bad life after all is it ?

Its Christmas Eve

Its a Wonderful Life

Its A Wonderful Life

Glorious

Thanks to Hails from Nottingham for bringing this song to my attention.


You will never get older and you will never feel pain
Or fill the room with laughter like you used to
And I won't hear you speaking or others call your name
In spite of this the world will still continueAnd you will always remain in my heart forever young
Sun and wind won't change you and you'll escape the hands of time
And now your beauty won't betray you and your future's paved with gold
But in my mind you are suspended and you will be forever youngI'm a little bit hopeful that we all carry on
But part of me still thinks we're all just stardust

And from the highest mountain I went to make a sound
I thought that if I called out you would answer
But no one did And you will always remain in my heart forever young
Sun and wind won't change you and you'll escape the hands of time
And now your beauty won't betray you and your future's paved with gold
But in my mind you are suspended and you will be forever youngI know the rules of the game
For every sunset the light has to fade
But baby a light like yours was so glorious
Glorious

AN INFINITE SKY WITH INFINITE POSSIBILITIES

If you are reading this then dont be annoyed - its not about you.
The very fact that you are here means that you care.
I can never - ever - get across how much the support of the wonderful people who are helping us has seen us through some very dark times.

You know who you are and you know I am talking about you



but

There's something I don't understand

I'm going to try to be factual and not write in my normal soppy style.

Our daughter died of a horrendous disease called SMA. She was our absolute life and a beautiful,sensitive and amazing little tinker.

We started SMASHSMA because we did not want more parents and - importantly - more babies to go through the journey we went through

The room where they tell you that your daughter is going to die
The long discussions about death and how she will die
The tubes and the machines and the hospitals and watching her slip
Seeing her almost die a half dozen times
Lay awake at night hearing the machines and watching her and praying
Praying that when the end comes it will be kind
Praying for time and moments in the sunshine
Praying for Christmas and a first birthday

We did not want parents to have to do that.

The hard bit for us is over - well as far as SMA is concerned
We are both carriers FACT
If we try for another child there is a 1 in 4 chance they will have SMA FACT
If we go down other paths we can have a child that does not have SMA FACT

We're sorted

The reason I spend 7 hours a day answering so many requests and trying for so many followers is for other parents and other children

Because if Estella has a legacy it is that she was born to reasonably articulate parents with bits of media knowledge. Maybe we can raise the profile of this awful disease

We're not asking for charity
Or pity
Or anything

We want three things

1) That every person  is TOLD by their doctor / Hospital that there is a disease called SMA and that they have a 1 in 40 chance of being a carrier
2) That every person is then GIVEN THE OPTION of a FREE test to see if they are affected.
3) By raising awareness we can bring the CURE for SMA closer than it already is.

We are having great results

The people who get up every day and tweet and tweet and tweet
The celebrities who pass on the message
The schools that now have SMA on their syllabus
The stars and candles and body writing that people are doing for Estella
The donations to BlueBell Wood and Jennifer Trust
The amazing video that Gemma made about Estella
The amazing meeting with the SMA milk people getting 25 thousand pounds for SMA research
The UK giovernment allowing a petition for FREE SCREENING
The wonderful and beautiful people who support us and write every day
The parents who have just had children with SMA that say we give them courage
You

Its bloody fantastic.

So what's the problem ?

The problem is that there are a lot of people who do not get it

We ask 8,200 followers on Twitter and 1,000 on FAcebook to sign a petition.

If they are not in the UK they can not do that. We get that. They then encourage UK followers to do so.

but

Simple Maths

If half of our followers signed the petition and asked for 10 of their followers to sign as well then we would have 44,000 signatures by now.

Remember some of our followers have 5,000 followers of their own and more.

So

When we ask them to retweet the petition if they all did we would reach 4.2 million people.

If those people then retweeted we would reach 325 million people

and if 1 in 3000 of them signed the petition we would then have the petition passed.

Instead we have 400 people who have signed the petition.
Instead we have 126 people who retweet the messages


I get that maybe we tweet people too much and they may get annoyed at their timelines filling.
I get that people see this as just another charity - just another cause

But thats the whole point

Its not a charity. Its a way that their children and their grand children are not born with SMA.
People kept saying to us - sympathy and saddness are fine but we need something concrete

Here is the concrete

Sign the petition  - 55 seconds
Retweet the petition 5 seconds

One minute
The world changes

You know that I try to remain positive. Our daughter is gone. She will never come back.

This campaign has helped us both - because of people like you

But when X-Factor and stray dogs and ice cream flavours and fashion tips get tweeted and trend and get millions . . .

I understand but what does it say about our humanity and our dignity.

We are trying to save the lives of other children. We are trying to do something amazing. We are trying to use social media to actually rid the world of a diesease. The disease that is the number 1 genetic killer of children.

and at the moment we are being made to feel as if we are begging


Its not you. Its not people - they are inherrantly good and caring.

We have tried to make this campaign funny, sad , heart rending , inspirational and uplifting.

Because thats what I promised my little Tinker

We have tried to touch the hearts and souls of people and asked them to cuddle their own children Oh so closely

Because thats what I promised my little Tinker

and I wont give up - and I will go on and we will smash SMA

Because thats what I promised my little Tinker


Last night I seriously considered ending this campaign - Maria told me to sleep on it

This morning I remembered that I have no right to do that.

It was never my campaign.
From the minute it began it was never our campaign.
Maria and I are not the campaign.

It's yours
It's  definitely and unquestionably . . . yours

Its hers

Don't just smash SMA - give it a bloody good kicking.

and then give it another.

x

THE UNREACHABLE STAR ?

See all the stars - See how they shine for you

Estella means Star

The nearest star to our planet is very familiar to us all. It’s called Sol and we know it better as the Sun. Although its 93 million miles away the light from the Sun takes only 7 minutes to reach the earth. Hold that thought and then think of the stars.

As you gaze into the sky at night and see the stars remember that each and every one of them is a Sun, burning away in the coldness of seemingly infinite space. The distance that we measure the proximity of these stars by is called light years and one light year is the distance light travels in a year. Light from the Sun takes seven minutes to reach our eyes - light from the stars ? Thousands of years. At the outer reaches of our own galaxy the light takes 95,000 years to get to us. That’s just our galaxy ( The Milky Way ) - beyond that are the stars that make up our universe.

What’s the point ?

The point is that the stars we see at night may not even be there,
If the star I just mentioned ceased to be , burnt out or blown apart then as far as we were concerned we would be still seeing it and it would still be there for 95,000 years. It shines its light and we see its light and as far as we know its still there.

All we see in the night sky are messages from another place - but more importantly messages from another time. All we see are photographs of the past. When we are looking into the night sky we are seeing so many stars and many of them are no longer there any more. We are seeing memories and echoes and dreams. They don’t exist but we see them.

When Estella said goodbye I remembered something Maria had said to me shortly after our daughter had been diagnosed with SMA. She said that maybe we had given her the wrong name. Estella means star and after only eight weeks of life we knew that we were fated to lose her within a few short months. With heart rending finality we realised that every time we looked into the night sky we would see stars and constantly be reminded of her. It would be so painful. Her very name suggested that she belonged in the heavens. Her very name suggested that she would always be millions of miles above us separated by impenetrable distance and time. That distance and that darkness would be part of our sorrow. That distance and that darkness would define the rest of our lives. The distance and the darkness to Estella.

Estella means Star.

But that’s not what happened.

Since Estella died our days have been filled with so many messages from the little tinker that even a cynical so and so like myself has completely redefined his belief in life and loss.

I know that grieving parents will look for signs everywhere and I understand that and can suggest so many reasons that explain the inexplicable. If only one or two things happened I would think that we were being fanciful but there is not a day goes by without some little message from our tinker. Last night for example we were watching television and the programme we were watching played the old America hit, Horse With No Name. I used to rock Estella in my arms and sing that song to her - guaranteed to make her sleep. The song played on the radio at the exact time she died on the day after she died and the day after that as well - and here it was again. Maria and I looked at each other , felt a tingle and carried on watching TV. We were suddenly saddened and missing her so very much. I know that songs can play at any time but the very next scene on the same programme had the Aquarium Music from Carnival of the Animals. That was the only music we had at Estella’s funeral. The music that played as they took her coffin away. The music I have not been able to play since. it’s a dreamy haunting refrain. It was perfect for the funeral. It helped us leave her and walk out of that Chapel. Something I did not know how we could ever do.

Probably means nothing.

The first music my baby heard and the last music that played as she said goodbye played within 10 seconds of each other on a random TV show.

Probably means nothing.

Don’t get me wrong. I am not talking voices or messages from beyond the grave. To be honest I don’t believe in that.

What I believe is far stranger

I believe in the energy from those stars. I believe that when those stars die and their light remains that we are seeing living proof that we are more than just flesh and blood. At what moment is Estella gone ? The second she breathed her last breath ? The moment her heart finally stopped ? The day she was in her coffin and left behind in that church ? When is Estella gone ? When is she no longer Estella ?

And the answer I am getting is that she never ever goes.
And the answer I am getting is that she is still here.
And the answer I am getting is that she always will be here.

Nothing goes while it is still there. The stars that fall are still there to our eyes because the light that traverses the Universe says that they are still there. The love and the kindness and the devotion and the charm and the charisma and the joy and the laughter and the looks and the tears and the grace and the beauty and the bliss that was Estella is still here with us every single day.

The light from the stars comes through clearer when the skies are darkest and by the same simple rules the memories we have of our little tinker come through as music on a stupid TV show at the exact second we need to hear her. I really think it may be that simple.

When you look up into the night sky and see the messages from another time you are reminded how infinitesimally small you are. How vast is the Universe. How divine are the distances. How profound the motion.

And yet at the same time you are alive and breathing and thinking and miraculous and you are reminded - how complicated you are. How small is the universe How divine is your emotion.
Our daughter died on 13^th November 2011 at 1.26 p.m.
She died in Maria’s arms
We were able to remove her breathing mask and her Mummy felt her last breaths on her face and kissed her goodbye. I sat holding her hand and smiling at her because I did not want her to see me cry.
And nothing you have ever known and nothing you will ever know could ever prepare you for that parting. There is no script or plan - there is no how to do. You just do.

We will never see Estella again. We will never hold her or kiss her or touch her or watch her grow. We will never see her eyes shine with wonder as she discovers the special beauty of this wonderful life. We will never watch her try to ride a bicycle or see her cry because her hamster died. We will never watch her on her first day at school or see her blow out candles on a birthday cake. We will never ever hear her voice. We will never ever kiss her goodnight.

Ever

For Ever

And Forever is a long long time.

But

Every single day the tinker shines across that universe and gives us so many echoes and images of what was and what will always be

We still see her legs splashing in the bath
We still see her laughing at silly TV shows
We still see her indignant raised eyebrows telling us off
We still see her cradled in our arms listening to singing
We still see her in beautiful clothes
We still see the charm and the smiles that she brought into the lives she touched.
We still see the happiness she brought us and we will know we were so lucky to know her.

She didn’t deserve to die She didn’t deserve a crippling, incapacitating disease that took her strength and her breath and her life. She didn’t deserve losing those special special years. She didn.t deserve being parted from a Mummy who is simply the best there could ever be.

Nobody does

But

More than that she didn’t deserve to be forgotten.

 We are biased but there was an amazing mind in that body. A wise old head that knew what was happening around her. Gentle and perfect soul that took us both through a horrible darkness to find timeless beauty that will always be there. We know that. You wonderful , amazing people are making sure every single day that she is never forgotten.

Always

Like the shining stars
Like the universal light
Likethe wonder and the beauty that is Estella


Estella means Star

My Muppet Daddy Talks Nonsense Mister Giraffe

SMASHING SMA - GREAT NEWS

Those of you who follow the Twitter feed (@estellastar1) will be familiar with the discussions that we have had with the SMA milk company.

For those of you who do not know SMA milk is marketed in the UK. Although there are no links between the product and Spinal Muscular Atrophy (SMA) we had raised the issue that we found their advertising very upsetting once Estella had been diagnosed with this disease.

There we were - newly diagnosed with a  disease that meant certain death and trying to deal with a  myriad of emotions only to see that there were adverts everywhere as a constant reminder of SMA. And what was worse these were adverts for a baby product containing healthy children who would grow and walk and run and ...live.

We raised the matter with the SMA milk parent company and to be honest were concerned with their initial response. Although they were aware of the disease they were not prepared to do anything about it:. We pressed the matter and a meeting was set up between ourselves and two representatives of the company-

That meeting took place for an hour this morning.

And it´s all good news

We had a conference with European Medical Director Dr Arun Mistry and The Head of Stakeholder Engagement Judith Luker

Here are the headlines

• The company say that it would be very difficult for them to change their name as they have such a well established product that was named well before SMA the disease was discovered. We achnowledged this but mentioned the example of AIDS slimming bars that changed their name after possible identification with the HIV virus.
• They acjnowledged that it would be hurtful for parents to see SMA products being advertised. They were very understanding and clearly touched by Estella´s story. This was very genuine
• They had decided to make a donation of 25,000 pounds to the Jennifer Trust group to help fight SMA. They said that they had contacted the hroup and made this clear that this was due to the feelings that our story had stirred. We are very grateful for this. We accepted this in the spirit it was intended
• They listened to other ideas we had regarding the promotion of SMA awareness. Our take on this is very simple. It can not be good for them to have a name associated with a disease that kills babies. If they do not want to change their name then it stands to reason they would benefit greatly from ensuring that SMA, the disease, did not exist.They stand a very good chance of being part of the solution to this terrible disease.One suggestion that we made was a small donation to SMA research for every item they sell.

It was a very positive meeting. I want to be clear that while Estella was alive she enjoyed SMA milk. It was  a great product and it helped prolong her life. There is nothing wrong with the milk. The unfortunate co-incidence is in name only. I believe that if the SMA company tried they could do a lot to bring awareness of the diesase through to people to prevent babies being born with SMA . and they can bring the cure date forward significantly.

For these reasons we have decided it is best to work as closely as possible with the company. They were not the faceless multi nationals we had expected. They listened and they responded. They have gone away to speak to their marketing people and whoever else they need to meet with. They will come back in the new year when we will meet again to see if there is anything more that can be done.

This isn´t just goiing to go away

but

What if..a multinational comapny really do have a heart and work with parents to do something about SMA? What if they acknowledge that they are in a position to make a difference to the 1 in 40 people who carry this awful disease? What if they become the solution ? How good would that be ?

They were absolutely brilliant today and I have great hopes for a working relationship that will truly honour Estella and her short life.

For now - let´s put down our weapons and achnowledge the fact that this was far better than I had hoped for teh 25k to teh Jennifer Trust is a sign of goodwill and an acknowledgement that they care.

I think we should be prepared to listen and to work together. They are parents and we are parents. They make a fantastic product and they want to help. That´s a good starting point.

That means we are on the same side.

Here´s hoping

Following the meeting we walked fown to the Park to tell Estella what had happened. It was beautiful down there and the sun was shining. I know she would have been very happy.Maria said she felt the happiest she had been since the day Estella left us.

The debate will continue but thats what it is now a debate and not a battle. ´

Photo shows Estella´s fountain this morning x

A TRIBUTE TO ESTELLA'S FRIEND

Guest blog from Maria on a very sad day for us.

We had sad news, a good friend of us passed away last Thursday. We had the pleasure of meeting her and her wonderful family at Bluebell Wood childrens hospice. Despite her illness she always seemed more worried about other children than about herself, despite her age she was so mature and dignified, supporting the ones who suffered for her with that gorgeous smile  x she gave estella a teddy bear to say goodbye, I made her once a flower for her hair. She was the last survivor of the kids I considered Estella's family at the hospice and something broke inside when I heard she left us. Our thoughts go to her wonderful family, to the fireworks, tears, laughters and apples that we ducked on Haloween and sll the times we shared. We will heal, we will feel our children around us as a blessing and we will keep on living knowing that we did our best to keep them happy. G and estella have the moves like Jagger in the skies

THE GHOST OF CHRISTMAS PRESENT

Dr. Seuss

Then the Grinch thought of something he hadn't before. What if Christmas, he thought, doesn't come from a store? What if Christmas, perhaps, means a little bit more?

ESTELLA’S CHRISTMAS PRESENT

We have many, many, theories about Estella. We could tell many tales of signs that we have had since she died that she is still there with us. When we do they come across ( probably ) as crazy talk or the meanderings of people that need to find hope and rainbows. I used to be cynical but I know that the things that have happened are true.  

Silly things. Some very personal but here’s an example. We were sat a couple of weeks ago on a tour coach in the Canary Islands. It was taking us on a day trip and we were both feeling very down. We see Stars everywhere and are reminded of Estella on a daily basis but this was very different. A family were on the seat behind us – turned out they were from Finland. Nice couple and their young daughter. Their conversation kept drifting in and out and I commented to Maria that somewhere in their language they seemed to be saying a phrase that sounded like makka pakka. This meant something because Estella’s favourite character in the TV series In The Night Garden had been the rather strange creature called Makka Pakka. It cheered me up to hear the phrase which I just assumed was Finnish for ‘Sit still and look out of the window’ or something like that. When we left the coach though we saw that the girl was actually carrying the same Makka Pakka doll that Estella had loved and realised that they were actually saying Makka Pakka. Thousands of miles from home there was Estella’s doll from a TV show that she loved. We felt our hearts beat to a different rhythm.

I know it could mean nothing

To us though at that minute it meant everything

People ask us how we are going to cope with Christmas and New Year and all. One of our theories is that Estella would have been very poorly indeed by now. One of the points that I don’t think I put across often enough is that despite her condition Estella was a deliriously happy girl. She had a life filled with love and experiences and enthusiasm. She had a life without pain and one where she enjoyed so many lovely days with her family. That’s not blinkered – its fact.

Towards the end though that little girl was starting to get very tired. We said throughout the whole journey during those horrific long and tortuous discussions about how our daughter would die – we said over and over that Estella would always tell us. She would decide when it was time to go. Those of you who read my ramblings will know that is exactly what happened and for that we will be eternally grateful and eternally blessed. If she had somehow made it through to Christmas, if she had managed to wear the reindeer slippers that Maria bought her, if she had managed to have the red stocking that I bought in November hung at the end of her bed , if she had been spoiled with the dozens of presents I know I would have bought her then she would have been a very poorly, very tired little tinker.

It was as if Estella did not want our memories of Christmas to be defined by seeing her struggle. She did not want us to see her trying to survive each day. It would have been horrific.

Instead we now face a Christmas season as a Mummy and Daddy without their darling. There are children everywhere and there is magic in the air and in the TV and in the tinsel and the music and the sights and sounds of Christmas. Its all happening around us though – as if its happening to other people – as if its happening at another time.

We will never watch Estella open a present. We will never see her eyes glow with firelight crimson tinsel, we will never sneak toys into her room as she sleeps, we will never hug her as she recoils in fear from the witch in The Wizard of Oz, we will never see her playing with toys or pulling a cracker. We will never hear her sing Away in a Manger. We will never sit by a window on Christmas Eve watching her , watching the skies looking for Santa. We will never have a photo of her on Santa’s knee. We will never watch her sleep at night dreaming of candy canes and sugar plums. We will never see the timeless beauty of her reading her first Christmas annual. We will never see her fall asleep at night face glowing with the sheer joy of Christmas

Never

But that’s fair

And its fair because she lived all of her life in Summer and sunshine and she gave us so many happy memories. Its fair because we will never be upset at the Christmas memories we never had

And its fair because for her to have carried on living would have been unfair

Unfair to her

We always said that when she was ready she would tell us goodbye. We prayed for an ending without drama and pain and tubes and machines and needles and breathing apparatus

We prayed to see her go with dignity and calm acceptance

That was out Christmas

That was out Present

And that was our Estella

Goodnight Godbless Little  Tinker.

Merry , Merry Christmas.

Mary Ellen Chase
Christmas, children, is not a date. It is a state of mind.

ESTELLA -A DAY IN THE LIFE

One month ago today we lost Estella.

It's been a hard day.

A month before Estella died Maria wrote down a view of a typical day in our amazing daughter's life.

So here it is. As told by cuddly mummy

My name is Estella Sweetman-Lopez and I’m 7 months old. 

I was diagnosed at 8 weeks with Spinal Muscular Atrophy type I. At an age where everything should have been about happiness and being thrilled about the future my parents were told I would live no more than a couple of years at the most and, more likely, not even seen my first birthday. My condition is the main genetic killer of young children and affects one in 6000 births and there are only around 50 cases diagnosed every year.  That's why most people have never heard about it, not even doctors.  

Basically SMA is weakening my body to such an extent that I only can move my hands a bit because the rest of me feels so heavy and tired. I can’t breathe by myself and I need a ventilator and oxygen at all times and a tube to be fed. Positioning me is another big issue as even the smallest of movements can cause me a cardio respiratory crisis.

 Despite all this, I'm a very alert and smart little girl, my brain is bright as a pin and I can tell you exactly what I want with my facial expressions. I love painting and watching Pocoyo and In the Night Garden and listening to music, specially Cabaret soundtrack and Lady Gaga. And here, in the fun bit, is where Bluebell Wood Children’s Hospice comes to life.  It’s where I’m living with my mum and dad; also my grandparents are here as I got very poorly. If I were at home I would have to be confined to my cot as moving is so difficult but here they have the resources so I can get the best from my days.

I get up at 9am and the nurses help my mum and grandparents wash and feed me because daddy is out at work. As soon as I wake up I watch Pocoyo. I can get upset if not.  At 11am its bath time and physio with grandma. After that, I meet some very funny animals- a meerkat and a skunk! They are very tickly but very gentle with me.    At 12pm it’s dinner time.  My mum and grandparents tuck into a tasty meal prepared by the Bluebell Wood chefs- today it’s homemade lamb stew, and rice pudding. I think they enjoy it. The chefs save some dinner for my daddy to have for his tea.

After dinner, Lee the respiratory specialist comes to see me to check that I’m comfortable.  After that, I go back into the living room to play and see everyone.  I then go into the messy play room and Bluebell Wood’s play co-ordinators, Diane and Catherine, help me paint with my feet.  I make a picture for my mum and dad with my footprints on.  It’s a lovely sunny day so after the painting we decide to go out into the garden for a bit. The Bluebell Wood gardens are lovely; they are full of lots of flowers and fun things for older children to do.  We pick some flowers and we all have a dance in the sunshine.  

  I spend the rest of the afternoon playing with mum and my grandparents with all the sensory toys Bluebell Wood has, and listening to my favourite music.  Then, when daddy comes back from work at 6pm, I have playtime with him.  He reads me my favourite story – “The Cat in the Hat”. After my parents and grandparents have had tea, we all relax until bedtime, which is 8.30pm.  My mum then changes my mask, my position and my nappy and I get read stories, and my parents sing lullabies to me.  Then I have a cuddle and a kiss goodnight.  Dad gets up to check me once in the night –to check all my equipment is working; and the nurses who are on night duty check on me every couple of hours. This means that mum and dad can get a good night’s sleep, knowing that the nurses are watching over me.  My dad checks on me again at 6am before he goes to work.

I love being at Bluebell Wood and I think I got better here thanks to the Bluebell Wood staff. The last crisis I had I was given a couple of days to live but I think I found life at Bluebell Wood had so much to offer that here I am, enjoying every single hour with love and laughter. They not only take care of me but also of my family so we can have lots of good memories and my mum can enjoy being my mum and not only my round the clock carer. Here at Bluebell I can do all that a 7 months old baby should enjoy, I can have a childhood no matter how long it lasts for, and I can look at tomorrow with a smile in my face because good things will continue happening to me.

Estella lived the last two months of her life, surrounded by people who loved her and cherished every single day she stayed with us. When the day came that we had to say goodbye, she did it peacefully in my arms while daddy sang to her. There was no noise, nor drama but just peace of mind she had a fulfilling life. All this was just possible thanks to such a magical place like bluebell wood, where miracles happen everyday. Our precious tinker never left us as we can feel her everyday by our side as she never left bluebell, her footprints are the star on their Christmas tree. Estella means star and bluebell means hope and love for many families like mine. We will be forever grateful for giving us the most valuable presents of all, love and laughter.


That was what Maria wrote. Four weeks later Estella said goodbye.

One month ago today

We miss those special special days.

ESTELLA - SMA AND THE MEDIA

The campaign to raise awareness about SMA has had incredible success. There are dozens of amazing stories and some of the followers we have are doing unbelievable things with shows of support that I am personally humbled by. They show respect towards our little girl that I find amazing from people who never met her charismatic eyes.

You have to know though that I have so many moments when I wonder if we , and in particular me , are doing th right thing. Are we keeping Estella alive and being untrue to her memory. Are we writing about her in a way that people will find disrespectful and strange ? I know the answer but believe me I do worry about perception. This is especially true when I feel raw and when I miss her and tweet my naked emotions. We get wonderful responses about being brave and inspirational and I always say that is simply not true. There is no bravery involved. There is simple and pure love. We know that Estella was cheated out of a childhood and a life by a cruel and incurable disease and we want her legacy and her memory to be that her life and her death saved other little ones from this experience.

That's fine

Where I have drawn he line is by not going for all out media exposure. Believe me I was very tempted as there is a part of me that knows that to highlight SMA I need to highlight Estella. That is the part that captures hearts and after hearts come minds. The problem I have though is that I do not want this to be just about one baby - even if it is our baby. To have stories written or excerpts on TV news about Estella and her Twitter campaign is to ignore the real issue. The real issue is that there is a disease that people have not heard of that kills babies. I think it is a story that 1 in 40 carry the disease and there is still no cure. I think it is story enough that if you go to a doctor and ask for a test for the number one genetic killer the answer is no.

I don't want this to be about Estella. That said I have decided that if anyone wants to use photos of her or details of her disease or her journey then that is OK. The bit I do not want is for Maria and myself to have names mentioned. It's not about us. I hope that this makes sense. I know that there are aspects of media coverage that we may miss out on because of this but we have to have some kinds of boundaries. I spend time answering every message we get. Some nights 300 to 400 replies but I really think its important that this does not end up being anything that suggests that Maria and I are parents who are in any way outside th norm. I want documentaries and articles and blogs and videos. I want all of that but I don't want people to think that SMA is something tht only Estella had. We owe that to every child who has or will have this disease.

What we owe Estella is to be faithful to the promise we made her. We said that we would do what we could to help beat his disease. You are all helping with that. If you think of ways to raise awareness even more then the answer is yes. If you want to use anything I have written the answer is yes. If you want me to talk to a meeting with 200 people the answer is yes. Where the answer is no is anything that seems to be about promoting us. We call ourselves Muppet Daddy and Cuddly Mummy for a reason. It's because Estella is important. SMA is important. Babies and parents are important.

We are not

Hope that makes sense.

EMPTY ARMS and A SILENT CHURCH

There is a tiny church in a little village named Baslow. For reasons we cannot remember this has become a place where we go when we want to ask for anything or when we are thankful for anything. We are not particularly religious or church goers but somehow in that chapel we always find peace and vestiges of tranquility.

When Estella was first diagnosed we had a wait until we would be told whether his was SMA 1 or 2. If it was SMA1 she would only be with us for about a year. If it was 2 she would be severely disabled but would live for longer. I rang the Vicar and he said that there would be prayers for Estella at all their services. I told him something Maria had said - that it should be like Estella was Tinkerbelle in Peter Pan. When you see the pantomime the children clap to show that they believe in Fairies. If thy clap loud enough then Tinks gets better. He did an amazing thing for us and rather than just prayers said he would invite the congregation to clap for Estella. They did. A beautiful moment.

We took Estella there once with her grandparents and we sat as the Vicar stroked her head and blessed her. We knew then that she was SMA1. We knew that we would never see her walk or dance or hear her talk or sing. Life had stretched before us and now as the Spring flowers bloomed it felt as if the world was closing down around us. There in that chapel we wept as we held her and we silently prayed for miracles.

We sat there today without her. Time had moved on and it was dark. No prayers today just words of thanks

Thanks that she never felt any pain
Thanks that we had so many lovely days with her
Thanks that her death was peaceful and that we were all together
Thanks that she had been so loved and so wanted

We had eight months with our little girl. For six of those we knew she was dying. We knew there was no tomorrow and no forever. We got something right though. We understood that these days were here for love and that these days were here for cherishing our very special gift. I look at photos that we have of her and she is looking straight at the camera but more than that she is looking at a spirited future when her eyes stare from picture frames into our hearts and our memories. She knew we would need her and you can see that in those eyes. She protects us and was there today watching us as we watched the space where we once sat watching her.

We have been so blessed.

I promised her that we would smash SMA and at the moment that promise is giving us focus and direction. You are all helping and I can never express enough gratitude.

So that's it. A church. In a meadow. By a river.

A little girl with eyes that shine forever.

We sat there today without her. We sat there today missing her. We sat there today howling inside at our loss.

She's here though. We knew that when she was being blessed and we knew that today.

One month ago today my little darling.

One month ago.

Puff the Magic Dragon lived by the Sea
And frolicked in the Autumn Mists in a land called Honalee ...

Repeat and fade.

A SKY FULL OF STARS

With a little luck we will go over 8000 followers by the end of this weekend. Well actually its nothing to do with luck I guess. Its down to the enthusiasm and sheer dedication of some of the most amazing people I have ever met.

I sat there today wondering why this is happening.

I camr to a conclusion that may sound very biased but it is based on what I saw happen while Estella was alive.

She had something very special about her where she seemed to win the hearts of people very quickly and very truthfully . There was something amazing in her eyes. We know that children with SMA overcompensate with purer emotions and oodles of intelligence but there was always something special about Esttella.

 She knew how upset we were that she was dying and sometimes she would give you a look that melted the heart and sank into your soul. A look that said - Its going to be Ok. I am going to leave you but I have had a wonderful life with so much love and so many experiences. We told her right from the start that we would fight while she fought but that when she was tired she would have to tell us and then we could say goodbye.

She came close to death several times and bounced back - confounding Doctors and experts but on the day she died her eyes were saying goodbye.

My point is that somehow that depth and that vision and that purity come across to those who never met her. Maria says often that Estella was not a little angel -she was a little bugger. She played with us and made our emotions dance and cried with us

but in the end she helped us while she left us. She helped us by leaving with no pain and no drama and no horrific tubes and pipes and medical nonsense. She left us because she agreed that it was time to go

And that was the only way I could ever saysgoodbye

and that was the only way I could ever sleep or smile again

And that was the only way that our little tinker showed that she loved us beyond love.

Am I suprised that people are doing so much to help us ? Oh yes

Am i suprised that they do so much for the dearest sweetest girl I ever met ?

Not one bit.

You are exceptional people. You are changing the world and if one day a baby lives because of you and because of us and because of Estella

Then this is fair - and this is just - and this is beautiful

Thankyou xx

WHAT IS SMA - Thanks to the SMA TRUST

SMA Fact Sheet

What is SMA?  SMA stands for Spinal Muscular Atrophy SMA is a devastating, genetic disease. It is a leading genetic killer of infants and toddlers, with 50% of the most severely diagnosed cases resulting in death by the age of two. Children with a less severe form of SMA face the prospect of progressive muscle wasting, loss of mobility and motor function. But their minds are unaffected resulting in bright, intelligent children with varying degrees of physical impairment. SMA is currently incurable and often fatal 1 in every 6,000 births is affected by SMA 1 in every 40 people is a carrier of the defective gene that causes SMA the child of two carriers has a one in four chance of developing SMA SMA affects motor neurons in the spinal cord. This results in muscular weakness, leading to severe disability and the possibility of premature death SMA is currently incurable There are three types of SMA that affect children: Type I is the most common form and is the severest type. Onset typically occurs before 6 months of age. Weakness is severe and manifests in difficulties moving, eating, swallowing and breathing. The proximal muscles, or muscles closed to the trunk such as the neck, shoulder and pelvic girdle muscles, are most significantly involved. SMA Type I babies have floppy limbs and tongue fasiculations (flickering). Type II is less severe. Onset typically occurs between 6 and 18 months of age. These children are able to sit at some point in their lives but never achieve the ability to walk. The most significant weaknesses are manifest in their proximal muscles. Physical therapy and orthopaedic evaluations can monitor the progression of joint limb contractures and scoliosis (a curved or rotated spine) development. Providing appropriate exercises and bracing may slow progression. Self-initiated mobility is often attained with electronic wheelchairs. Respiratory health is a concern and should be monitored to avoid dangerous respiratory failure and chest infections. Type III is the mildest of the three types. Babies appear normal at birth, and diagnosis is generally made when they are over the age of two. Children with Type III range from those able to take a few steps to those who can ambulate throughout their home and community. As some children grow, their larger bodies and heavier weight make walking and other activities more difficult. A child may require a wheelchair to navigate their environment. Individual assessments can help create tailored stretching/exercise programs. Bright young children are trapped within disabled bodies. For information on Adult Onset, or Type IV SMA, please refer to the Jennifer Trust website. What causes SMA? SMA is an autosomal recessive disease: “autosomal” diseases are inherited through non-sex chromosomes “recessive” genetic diseases only occur when genes from both parents are abnormal SMA is the most common autosomal recessive disease to cause infantile death and disability Most people have two Spinal Motor Neuron 1 (SMN1) genes 1 in 40 people has only one SMN1 gene. But those with just a single SMN1 gene still lead healthy, normal lives. They are SMA carriers When two SMA carriers have a child together, there is a 50% chance that the child will be a SMA carrier. When two SMA carriers have a child together there is a 1 in 4 chance that the child will have no SMN1 genes at all. They have been "deleted". This causes SMA. How does SMA work? In SMA, the absence of the SMN1 gene results in the production of low levels of a protein (SMN) necessary for the survival of motor neurons Motor neurons are the nerve cells that connect the brain and spinal cord to the muscles. Without them, muscles cannot be controlled and wither away Progressive loss of motor neurons in the spinal cord causes muscle atrophy Muscular atrophy of the trunk can lead to skeletal deformities. Muscular atrophy of the breathing muscles can lead to fatal respiratory problems. Muscular atrophy of the swallowing muscles can lead to difficulties eating and swallowing. How many people have SMA? In the UK at any one time, between 5,500 and 6,000 people have SMA What is being done? Rapid advances have been made since the SMN1 gene was first identified. Treatment pathways are under scrutiny: Mouse and fruit fly models have been developed which provide the means for high throughput screening. High throughput screening is a means of testing many thousands of possible treatment compounds using robotics and computers. This electronic means of testing large number of chemicals has significantly speeded up the process which allows us to find out if a particular compound has any therapeutic value for SMA. Early clinical trials are taking place Numerous research projects are underway (see The Work of the SMA Trust).

ESTELLA MEANS STAR

Hi

Eventually all of this will be tidied up and I will get lots of info about Estella and SMA on here but for now I just wanted to let you all know how the meeting with the Senior Geneticist wenr today.

A number of issues were raised and it was interesting to see the full support that we were offered. There is clearly a lot already happening but here is the outline

1) A meeting is being set up with Directors of one SMA group to discuss possible options. This does not mean other charities and organisations will be in any way excluded - see point 2
2) There is already a neurology alliance that we are being put into contact with. This group bring together charities and organisations working on all types of related diseases. This is the best way to seek action as then there will be thousands of people involved
3) The call for screening IS appropriate. there is a medical organisation that determines which diseases are screened for. there are precedents of this being changed by interest groups. We are being given the appropriate contacts and will lobby for SMA to be  apriority screening disease that anybody can get  a free test for. If there is opposition we will do this in the form of a government political petition. Some of the Twitter followers can already help here.
4) The £ 400,000,000 that was committed to SMA research last week will make a significant difference to the time taken to find a cure

So - to sum up

• We are now starting to press for universal testing for anybody who requests it
• We are now starting to talk to the charities and interest groups about pooling resources through the neurological alliance
• We are about to meet with the SMA milk company regarding a possible name change

Things are starting to happen

The only reason they are starting to happen though is because of the amazing support that you are all giving. There are some followers who are putting in hours a day pursuing more and more followers. We are genuinly grateful and humbled by the love and respect that you are showing for  a little girl who deserved the world. Estella would be proud of every one of you.

People keep saying that we are brave. We are not. We are a very upset Mummy and Daddy that have lost the amazing gift that we had for a few precious weeks.We cry every day but we promised that little tinker that we would SMASH SMA. What we did not know then was that there are people like you out there who would help us.

This is not just a small effort - between us we are going to make a difference and we are going to beat this disease. Not for us - not for Estella - but for every child that you , your children and your grand children have.

This changed our lives forever. Estella came here for  a reason. If you had met her you would have been amazed at the wise old soul that existed behind her eyes. What if her legacy was that other babies would live, that other Daddy's would not cry and that other Mummy's dont feel their child's last breath while holding them in their arms for the final heart rending moment?

Somehow then all this heartbreak makes some kind of sense

This is for real - we promised our daughter to SMASH SMA

Thankyou