Stephen Campbell
William Campbell's Angel Fund
Fundraising for Spinal Muscular Atrophy (SMA) UK
Story
Hello
Thankyou for visiting our fundraising page
Our story:
Update Feb 2016 - Cathy and Ste would like to thank everyone for all the support and fundraising over these past 6 years Every penny raised and donated means the world to us, and helps support other families who went through what we have and continues to do so against this horrible condition. This page is closing but we will continue to support the SMA trust going forward. Our new page is on http//fundraiseforsma.everydayhero.com/UK/baby-William-campbell.
We encourage and welcome all donations,thanks you x x x
On the 10th February 2010 our first beautiful son William Stephen Campbell was born. He was adorable and from the moment we saw him we knew we would love and treasure him forever, we were the proudest mummy and daddy in the world.
Will was born early at 33 weeks due to reduced fetal movement; he was born via emergency c section at 15.24pm at the Liverpool Women's Hospital. Will was taken straight to Special Care Baby Unit (SCBU) due to being premature. After a couple of days of being in scbu we noticed Will always moved his little hands and feet but was unable to move any other parts of his body, this was when we started to worry. Will had already had a MRI scan and everything was fine. The consultants started to suspect a neuromuscular problem and discussed further tests that would be taken and we would have to wait seven days for the results. One test was for a genetic disease called Spinal Muscular Atrophy (SMA) a neuromuscular condition causing weakness and wasting of the muscles. They informed us if this came back positive babies born with this condition are not expected to survive past their first birthday due to the respiratory muscles making it difficult with breathing, coughing and susceptability to infections. There was no cure. We thought this cannot be happening to us, we have our beautiful baby boy here, there is no genetic history in our family (so we thought), it can't be. However on the 17th February this was when our world was devastated when Will was diagnosed with SMA pre-natal type 0/1. After being stable for 10 days Will suddenly became poorly and on the 19th February two days after diagnosis Will our brave little beautiful boy passed away peacefully in our arms.
Will brought so much joy and happiness to many people in his short life. All he ever knew was love from his mummy,daddy and family. What babies with SMA seem unable to do physically they appear to compensate for with facial expressions, particularly their beautiful eyes and smiling faces as you can see in Will's pictures. Will was always very alert and responsive and had a lovely placcid nature. We will always cherish and remember the time we had together forever.
We have written a little poem which is about our special days with Will, together as a family.
Our Beautiful Little Will from Mum and Dad
On the 10 February 2010 at 15:24 our lives changed forever. Our beautiful baby son William (Will) was born early at 33 weeks and weighed 5lb 12oz.
The first thing we noticed about will was he was definitely a daddy’s boy, long little fingers, tiny big toes, long in the body and the cutest button nose. His hair was mousy brown and had lots of it too, his eyes the most beautiful which gave us so much enjoyment – always wandering and blue.
All the nurses on shift wanted baby Campbell in their care, he was very very handsome they would say, and often sit and stare.
Nappy time and feeds used to come and go, mum and dad were scared at first but soon got used to wiping his bum just so.
Will loved skin to skin contact with mum and dad, hugging each other tightly, never wanting to let go, he would listen to us and respond with the cutest of smiles, he recognized our faces, when we would kiss him a million times.
He held him mum and dad’s hands like a proper little boy should, how we would have loved to take him the park if only we could.
Will’s family who visited loved and adored him straight away, he was a bit of a poser having his picture taken day by day.
Bedtime was stories, Thomas, Gruffalo, and Mr. Men too. Then Ted, Moo and Humphrey sang lullabies to send him off to sleep- not a peep.
He always awoke the next morning at 6am, with Mummy and Daddy by his side ready for the next day again.
Suddenly on day ten Will became very ill; a very brave boy as he knew it was time to go, just slipped quietly in mum and dad’s arms to a peaceful sleep.
The 10 days we had with will felt like many more, the bond we shared I can’t explain we just want much much more!
Will you are the most beautiful, stunning and loved and adored son, and gave us the happiest most enjoyable time of our lives.
We are proud to be the mum and dad of little Will our precious son forever and ever. Thank you Will for coming/wanting to meet us.
Sleep peacefully our beautiful little boy William Stephen Campbell. We will see you again soon my son.
Twinkle, Twinkle, Little Star
Lots of love, hugs & kisses
Mummy and Daddy xxxx
SMA - SOME FACTS
We were in utter shock and devastation finding out about Will and finding out that we had both passed this genetic condition on to him. The only thing we could do was search the internet for some hope, there must be something they can do to save our beautiful little boy, there must be a cure, but this is what we found out:
Spinal Muscular Atrophy is a condition that effects the nerves in an area of the spinal cord called the anterior horn. These nerve cells become damaged to a lack of a survival protein and they degenerate breaking the link between the brain and the muscles. As a result muscles cannot be used and become wasted or atrophied. SMA is classified into a number of different types, based on the age at which the condition develops and the severity of the symptoms. Types 0,1,2 and 3 develop in childhood and type 4 occurs during adulthood. Will was diagnosed with type 0 prenatal SMA which is the most severe form of spinal muscular atrophy. It develops before birth, causing reduced movement of the feotus, which is usually first noticed between weeks 30 and 36 of the pregnancy.
SMA type 0/1 kills more babies than any other inherited genetic condition in the UK today
SMA is estimated to occur in nearly 1 out of every 6000 - 10000 births
The gene mutation that causes SMA is carried by 1 in 40 people or nearly 1.5 million Britians
There is a 1 in 4 chance of having a baby with SMA if both parents are carriers
There is currently no effective treatment or cure for SMA
THE JENNIFER TRUST
Throughout this difficult time we have been very fortunate to have had continuing support from family and friends, the Alder Centre and also support from an organisation called the Jennifer Trust who have provided us with an outreach worker for emotional support. The trust is the only charity in the UK dedicated to helping those whose lives are affected by SMA.
Their Aims:
To support every child and adult affected by SMA
To raise awareness of the condition
To offer advice and information to all those living with or affected by SMA
To provide emotional and practical assistance from the time of diagnosis
To ultimately find a cure through funding scientific research
The charity rely on donations to continue to help:
£10 - buys a family information pack
£50 - runs a free helpline for one month
£100 - funds transportation costs for a childrens trip during family support weekend
£250 - buys a sensory toy pack for type 0/1 babies that provide stimulation for sight and hearing
£300 - funds an outreach worker visit to a newly diagnosed family
£500 - funds one SMA affected family to attend family support weekend
£700 - buys a suction machine (loans service)
£1000 - funds a year activities for one regional group to offer families support and family days out
£1000 - buys a specialist pushchair/car seat (loans service)
Please see link below for further information
Watching you child suffering and knowing they have little time left with you is truly heartbreaking and there are no words to express it. It is every parent's worst living nightmare and continues to be making your whole world/life fall apart.
The Jennifer trust is now a charity which is very close to our hearts and by helping other children and families who are suffering or have been affected by SMA and by making their lives a little easier would be a great achievement and a huge honour in our son Will's Memory. It is now our aim to raise as much money as we can to ensure the Jennifer Trust can continue to fund their wonderful emotional and practical support and future reseach to find a cure. We are asking for your support and kindness and even the smallest of donations would be a huge help.
Thankyou
Cathy,Ste & Angel William
********* UPDATE 25.12.11*****************************
Cathy,Ste & Angel Will would like to thank everyone for their kindness and generosity over the last year. As you can see we have reached our target of £5000 which is amazing, thankyou all so much!! Thankyou!!
Massive, massive thanks go to John Fox, Jimmy Woods and Ste Williams who completed the Liverpool marathon 9th October 2011 raising money for Jennifer Trust. Thanks Guys so proud of you all. Thanks for everyone who sponsored them and helped us achieve our goal of raising £5000. As we have reached our target we will now be naming a star for William and will let you all know the name and constellation in the new year.
Donating through Just Giving is simple, fast and totally secure. Your details are safe with Just giving they will never sell them on or send unwanted e mails. Once you donate they will send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer.