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
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
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.
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,
Maidenhead,
Berkshire,
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
http://www.smanutrition.co.uk/about-sma/service-ads/service-tv-ad-1727.aspx
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. www.jtsma.org.uk
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.”
