Sunday, February 26, 2012


On Sunday 13th November our daughter Estella passed away. She died as a result of a disease called SMA ( Spinal Muscular Atrophy)

We are trying to raise awareness of SMA and are having such support from so many followers – particularly on Twitter (@estellastar1) but that is not why I have written this piece.

I am writing this to highlight the lack of sensitivity that has been demonstrated by the company that markets SMA milk for infants. That company is Pfizer. They are a massive research drug company. They are not one of the ones that is trying to find a cure for Spinal Muscular Atrophy. They make a milk product that is called SMA. It is an exceptional product and we have no problem with the product other than its insensitive name.

Quite simply

Pfizer make SMA
SMA killed Estella

You really don’t get too many moments of relaxation when you are parents dealing with any baby. This is even more the case when your life has been devastated by the sudden news that your child has a terminal disease and is highly unlikely to reach their first birthday. 

Living with this continual fear and worry is the way of life for parents who have children unlucky enough to be born with SMA type 1. This is the number one genetic killer of children and it comes about from a disease that is carried by an amazing 1 in 40 of the population.

This killer disease has just taken the life of Estella, our only daughter. She was born in February and diagnosed in April with a disease that would take her mobility, her speech , her breath and finally ( November 13th ) her life.

Shortly before she died though we had managed an evening of relative normality. The TV was on with some light entertainment and we had treated ourselves to a home delivery pizza. For a few moments we could put aside the fear and the worry and the sadness and try to numb ourselves with trivia and high carb foods. Then like a sudden dagger the evening changed.

There was an advertisement for baby milk on the TV. The lovingly crafted advert extolled the virtues of SMA milk, We sat in silence and both Mummy and Daddy soon has tears rolling down their face at the cruel reminder. The TV was turned off and the pizza remained uneaten.

I contacted the company in an effort to try to explain the hurt and the upset that their product was causing. I knew that once they were made aware they would realise that their product name was exactly the same as the number one cause of genetic infant mortality. I had to let them know

Their answer was beyond belief

·         They were already aware that SMA existed as a disease

·         They were already aware that it killed babies

·         They said that they could not change their product name as they had named the product before the disease was discovered

·         They said that they had considered making a donation to SMA charities but they already donated to charities and only ones that covered health inequalities

·         They said that as parents they were aware that this would be upsetting to parents of SMA children but there was nothing they could do about it.

1)   If they had a product called AIDS – named before trhe disease was discovered would they still use that name ? How about SIDS ( Cot death) or maybe even Cancer ? Of course they would change the name. They do not because they belive that not enough people are aware of SMA

2)   What greater health inequality can there be than a baby dying from a muscle attacking disease. What the company mean is that they support getting their milk products into third world houses instead of breastmilk. They persuade through their charitable donations.

3)   If the company were making cars called SMA cars or DVD players or clothing I would have no problem  They make SMA milk for new borns and babies. SMA kills new borns and babies

Please for one minute try to imagine the horror and the upset that seeing this product advertised on TV or in baby stores or pharmacies can cause.

This is not acceptable

I asked them to reconsider their response

They arranged a telephone call with us over Christmas and donated £ 25,000 TO THE SMA charity - The Jennifer Trust. They said they had been very moved by Estella's story and that they would get back to us in the new year after they had considered what else they could do. It was a very positive call with a very sensitive Doctor. I have praised them for this elsewhere in these postings.

When they called back they said that there was nothing else they could do.

1) They had made a donation to SMA funding
2) They were not allowed to highlight SMA on their products
3) They were not expert enough in the drug field to sponsor any advert to raise awareness of SMA
4) Their product had a proven name that was trusted

And now Estella is dead. Killed by SMA and not worthy of support from the company that caused us such sorrow. Enough about us  though – what about the thousands of parents who see their adverts and products while coming to terms with the gradual and tragic deterioration of their beloved baby.

Is it fair taht while you watcch your child slowly say goodbye you are constantly reminded of teh desease every time you go to buy milk ? How insensitive is a company that is aware of teh upset it is causing and yet donates £ 25k while at the same time insisiting that this does not mean that they recognise the issue.

£ 25,000 towards SMA from Pzifer is like you or I dropping a penny down a grid and then getting tax relief on our loss.

We wanted them to fund a one page advert in a national newspaper simply telling people what Spinal Muscular Atrophy was and what is being done to cure it. That was it. That was what we wanted.

What can be done ?

1)   Contact SMA ( Pfizer) and tell them you are disgusted

2)   Contact your MP / congressman / senator / local newspaper and ask them why this company are allowed to do this

3)   Tweet all your followers calling for the withdrawal of SMA milk from shelves and hospitals
4) We have a new Twitter group @smashsmamilk please join

How to contact them

In the UK:

SMA Careline: 0800 0 81 81 80 (freephone)

SMA Nutrition
Pfizer Ltd
Vanwall Road,
SL6 4UB,
Telephone: +44 (0)1628 692 010

In the Republic Of Ireland:

SMA Careline: 1800 931 832 (freephone)

Pfizer Nutrition
9 Riverwalk
Citywest Business Campus
Dublin 24
Telephone: +353 (0)1 467 6500

THE TV ADVERT – How would you feel

 Many of our followers have warned us that we have to be very careful what we say as Pfizer are a massive compamy with some very good lawyers.


Dear Pfizer lawyers please come and tell us that what we are doing is wrong. I would love to have the debate out front in the media.

Here are the facts

SMA killed Estella
Pfizer make SMA

If you think there is any confusion caused by the juxtaposition of those facts then CHANGE YOUR NAME

Estella's Story

Estella was diagnosed with Spinal Muscular Atrophy (SMA) Type One in April of 2011. Although fairly uncommon the disease is the number one genetic cause of death among babies. The muscular development becomes limited and Estella has had breathing difficulties and has lost all but basic movement in her hands. Details about SMA can be found at the Jennifer Trust website.

One thing that her parents found difficult at first was to believe that even with such a condition and the inevitability that Estella would be unlikely to see her first birthday there could still be good times that could be shared. Estella overcompensates for her physical difficulties with a sharp mind and a wicked sense of humour and has brought many happy days to her parents and grandparents.

During a respite stay at Bluebell Wood Estella became particularly poorly and moving her back home would have been a very difficult process. Because of this her Mum and Dad decided to stay at Bluebell. Her father explains, “It is not just because of the care that you get, it’s because of the quality of life and experience that is offered here. Bluebell is an amazing place but not because of the facilities and the equipment – it’s because of the people who work here. They have a philosophy based on turning what is a horrendous experience into one that brings comfort, support and even laughter to the children and their parents. The support is so personal and so loving that you feel that every nurse here has been part of Estella’s journey.”

Estella’s Mum added, “ We have seen the place from both sides now. We have been here for respite and we are now staying more long term with Estella to make sure that she has the best possible experiences before we have to say goodbye. She has had art, music and multi-sensory lessons. Never forget that behind her disease there is a little girl who gets excited and thrilled dipping her hands in cool paint and making sounds in the music room. She has had support here but we have also been able to walk around the gardens here and show her the flowers and trees. She needs to be on a special stretcher for this and it is simply an experience we would not have had at home.”

“I will be honest, “ her dad continues – “we were unsure about coming. I believe we had a fear of what a hospice may be like. If anybody feels that way I would urge them to visit for half an hour and you will see that this is a very special place run by extraordinary people. Bluebell Wood has given our family three very important gifts. They have given us space to enjoy our daughter, comfort to rest and know that she is getting the best care possible but most important of all they have given us the most precious gift of all – time. Time for Estella to play and laugh and smile, time for Estella to enjoy the kinds of things that a seven month old should enjoy and time to say when all this ends that we know she was in no pain and had the best possible experiences that she could have had in her short life.”

Mum and Dad are biased and they know that but they do say that every nurse and every visitor has commented on how gorgeous their daughter is. Mum says, “That is because they have seen Estella smiling and happy. They have seen her living and loving and being loved. We thank everyone involved for the amazing support that they have given. Estella did not come here to die. She came here to live.”

Thursday, February 23, 2012


For a little girl who was only here for a little while Estella sure made some friends. One of the days I will remember all of my life is the day that Iggle Piggle from the Night Garden came to visit our little Tinker at Bluebell Wood.

I had been extremely lucky to come across a wonderful lady who had an Iggle Piggle suit and one Saturday she came along to spend an hour with Estella. She had fallen asleep and one can only wonder what went through her mind when she awoke to see Iggle Piggle standing by her bed. Iggle Piggle with his big red blanket and eyes that Estella stared at goggle eyed. She made her ooh ooh ooh face. She raised her little eyebrows

It was one of the last times I saw her beautiful smile.

Iggle Piggle came to her funeral a few weeks later and draped the big red blanket over Estella's little white coffin. Iggle Piggle waved her goodbye and gave us all balloons to release into the sky. Iggle Piggle skipped away from the funeral leaving us all laughing..and crying..and laughing

Imagine Estella looking down at that room. People sat there with tears in their eyes. Daddy and Granddad carrying in her coffin and on the back row a giant Iggle Piggle crying into a hanky. Estella would have laughed.A lovely sense of the absurd. Imagine the scene.

'And Who Are You ?'
'Yes - may name is Iggle Piggle....

She would have been a year old tomorrow.

I would be getting ready now to spoil her. There would be a party and my stupid theatrical nonense brain would have arranged some cartoon character to pop in to see her. I would have bought her a new dress and far too many toys. There would have been cake and a candle. There would have been disbelief that a year had passed.

There is disbelief that a year has passed.

She has not been here for over three months now and there will be no birthday party tomorrow. There will be no cards. there will be no wrapped presents. There will be no tales and no songs. The dearest treasure of my life has gone and will never have a birtnday.

Never Ever


We have bought her a toy wooden monkey. One of those that dances on a set of gymnastic bars.
We have bought her some Chinese lanterns. Lights flying to the heavens.

Tonight when it is dark we are going to go to the park where her ashes are spread. We will cast the monkey into the pond to shock the ducks and make Estella laugh. We will release our souls on chinese lanterns to try to float them closer to our daughter and we will sit

on a bench
in the dark
in the rain

In the Night Garden

and just maybe somewhere off into those trees Iggle Piggle will be watching.

It's time for bed Iggle Piggle

So much has happened in that year. So many laughs. So many tears.

And tomorrow she will be one year old.

She should have toddled
She should have sang
She shoudl have danced
She should be excited and breathless with anticipation of tickles

Instead she was breathless with SMA

And nothing will change that
And nothing will bring her back
And I will never hold her again

I get that
I honestly understand - I know.

But tonight I am going to sit In The Night Garden and watch the stars.

Tonight I am going to watch the stars

And tomorrow ?

We're catching the Ninkey Nonk and getting away for the day

All across the world hundreds of you will be

Lighting Candles
Tweeting and retweeting
Getting celebrity retweets
Making Stars
Writing SMASH SMA on your bodies
Releasing balloons
Singing A Horse With No Name and Puff The magic Dragon
feeding your kids far too much cake and letting them stay up later than normal

Whatever you do for the Tinker please please let us know and post photos


I woudl be grateful if you would all raise a hell of a noise tomorrow.

I know you will

A year ago today i did not know any of you. And yet so many people have helped us with this whole journey. So many people who have gone so far beyond anything that I had ever thought possible.


I have met some amazing people


forgive me this

I met one person who was amazing beyond amazing. A gentle soul with an ironic lifting of an eyebrow who could melt your heart. A little girl who believed in stars and rainbows and dreams and Iggle Piggle and The Cat in the Hat and.. . .me

She believed in me

Thankyou Estella for making me a Daddy - if only for a moment

Happy birthday my absolute darling.

I'll see you in the Night Garden

the night is black
and the stars are bright
and the sea is dark and deep

someone i know is safe and snug
and they're drifting off to sleep
round and round
a little boat no bigger than your hand
out on the ocean
far away from land
take the little sail down
light the little light
this is the way to the garden in the night

She will be there waiting for me

In the garden in the night


Someone I know is safe and snug

In the garden

In the night

Monday, February 13, 2012


So here we are three months to the day after Estella left us.

I know there is a lot that has happened in that three months.
I know that we ( and I include you in that ) have managed to get the SMA message out there.

We have raised thousands of pounds for various charities
We have managed to get over 15,000 followers on Twitter and Facebook
We have met with the Deputy Prime Minister who has started an enquiry into SMA
We have challenged one of the biggest drug companies in the World to have  a social conscience
We have received over 100,000 messages of support about Estella
We have seen SMA mentioned in school assemblies and placed into curriculums
We have had hundreds of people telling us they had never heard of SMA before
We have managed to be in a position to raise awareness about other diseases

There are days when I think we have achieved nothing but the list above tells me that in three months we have done a lot to raise awareness about SMA


That's not what today is about.

We have been lucky enough to win the support of some of the loveliest people that I have ever know, I dont think that is because of anything to do with us.

It's to do with Estella

So please - today - permit this Muppet Daddy one indulgence.

Today I'm not smashing SMA or howling about the ignorance of drug companies. Today I'm not asking for a petition to be signed or genetic testing for all.

Today I'm not campaigning about anything

Today I am back  there in that room three months ago.

We lay her on her bed and she watched an episode of the Night Garden.
She smiled at Iggle Piggle.

but something was wrong

and we knew

And we placed her in her Mummy's arms and I knelt by their side and I held her hand and I looked in her eyes and all we had ever hoped for and all we had ever dteamed and all we had ever wished for in those long lonely nights came true

It came true

She told us

She told us with her eyes and her little hand that held my finger and her troubled and tormented breaths. She told us with the machines and the numbers and the bleeps and the sounds and the looks of Nurses who hoped that we would not be foolish and start to make the wrong decisions

and in the greatest blessing I have ever known Maria and I shared exactly the same thoughts at exactly the same moment

and we knew it was time to say goodbye

It was time to hold my breath and say goodbye to my daughter

We took off her mask and she looked at us and we kissed her and we held her and she left us in total peace and without pain and with all dignity.She left us with her breath on Maria and holding my hand. She looked into our souls and her eyes said cheerio

It was a beautiful death

And now three months on I am back in that room again.
I am living that day and that night and the time I sat by her holding her hand and reading the Cat in the Hat
and singing Puff the Magic Dragon

and saying goodbye

Goodbye to the wisest , kindest , most beautiful soul I have ever known. A little girl who has inspired so many of you to amazing acts and beautiful moments.Goodbye to my little daddy's girl. Goodbye to my Estella

I can't feel her anymore

For a few weeks there were signs. There were elements of nature and happy coincidences and a glow that pervaded so many of the dark moments. She seemed to be everywhere.

I can't feel her anymore

It could be that she has moved on now. it could be that I am not deserving, It could be that senses numb and life moves on.

There is not a  single moment my little Tinker when I do not miss you with all I am and all I will ever be. There is not a single moment when I do not think of your beautiful little face and how weak and innocent and wretched your tender body became as all movement was taken from you. There is not a moment when I will ever forget holding you in my arms , rocking you , with a  motion that would calm the world, There is not a moment when I will ever forget your eyes filled with mischief as you snuggled into the big bed.Cheeky Monkey.

There is not one moment

I can't feel her anymore
I no loger have signs

and maybe , just maybe - that's because I never did. Maybe there is no such thing as signs . Maybe all there is is the complete and utter devotion and love and happiness that that little girl brought into my life. Maybe there is no need for signs. Maybe its all about the awful and permanant reality that I will never see her again.All thoughts and memories and desires melt into that one hard fact.

That I will never see her again



If i close my eyes and I open my mind then every one of those incredible moments comes flooding back. Every heart rending night and every beautiful day before we were told thar she was fated to die. The pride as we pushed her pram, the bath times , the blanket wrapped moments, the fun clothes and the eternal joy of simply holding her and rocking her.

I remember her lay on my chest one evening as I sang Moon River. She fell asleep and I looked up seeing Maria watching us. She said that she would remember that moment all her life. Days later we were told that Estella would not be staying with us. I remember that feeling as I sang Moon River and just for five minutes I was a perfect Daddy - just for a moment

So please permit me this indulgence

I am going to spend tgonight thinking of my Tinker and remembering every smell and sound and touch

and maybe

Just maybe

If i am lucky - she will come back for a moment. Concrete and eternal into my mind Maybe when I sleep at night I will see her in my dreams ?

Then I will see her again

Then I will feel her again

That would be fair wouldn't it ?

That would be fair.

That would be kind

That would be right.

I miss you Estella,