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.”


  1. It is plainly not true that companies cannot change their long held and trusted brand names, there was AIDS bars (a slimming product) they changed that pretty quicky.
    There are other examples, remember when Snickers choc was called Marathon? Cif cleaner, which used to be Jif? Oil of Olay, a beauty product that used to be Oil of Ulay? Small changes, but that is really all Pfizer needs to do, it dosen't need to be unrecognisable.
    So there is plenty of evidance of sucessful branding which has been changed without damage to there is no reason why SMA should be any different, except possibly, and sadly, lack of inclanation.

  2. Jenny I totally agree. A small change is all that's needed and it could even work in their favour, a relaunch if you like. To say its a name they have had for so long that it's known and trusted is rubbish. Do they think their consumers would suddenly not buy their product based on a name change!?! They must think consumers are stupid! Keep going muppet daddy! X

  3. Its very sad and hurtfull to mums and dads who have had there hearts broken and then be told some rubbish of saying they cant change the name of baby milk! if anything i would of thought it would of given them more respect for changing it !! but it always comes down to the cost (very wrong) . your doing a great job and im sure everyone behind you. I was unaware of this till now!!! and i will support you all the way xxx