About Scott Ward Schofield

Scott was born on 18th May 1990 in Munster British Military Hospital. After a normal pregnancy and a normal straight forward birth, full term. I noticed shortly after his birth that his left leg and foot were raw, without any skin at all. I was horrified. The nursing staff tried to re-assure me by explaining that his leg had probably been caught in the birth canal on delivery and they would get a doctor to come look at it.

Hours later as I tried to feed Scott, I noticed blisters appearing around his mouth and inside the mouth. This was causing Scott terrible pain and he was screaming. I also noticed that where I had held him he had blistered finger marks on his upper abdomen.

When the doctors came they suggested that they take my baby away to the nearby special care baby unit. Only two days later they confirmed that Scott had Epidermolysis Bullosa. They told me he would die within hours and arranged a baptism to take place in the hospital. Scott was heavily sedated in the unit, I noticed he had blistered on his hands. It was only by chance that a friend had seen a television appeal about a young man who had suffered from the same illness. Great Ormand Street hospital in London was where he was cared for.

The day after, Scott was transferred from Germany to Great Ormand Street, along with myself and one case of belongings.

I stayed in Great Ormand Street for six weeks, whilst I learnt to pop blisters and carry out the dressings regime. It was heartbreaking, I wondered what kind of life my baby would have enduring all this, through immense pain, I couldn't even cuddle him for fear that I would hurt him and tear his fragile skin.

Scott Ward Schofield and his puppies

Scott and I came home from hospital when he was 3 months old. My marriage fell apart and sadly his father never saw Scott again. Scott and I embarked on a new life, back here in England. I got a job and my mum gave up work to look after him.

Scott became a fantastic character, he was strong willed and determined. He walked at 2 years of age and went on to ride a trike play football with a sponge ball. He attended a mainstream primary school and had a carer with him throughout his school day. He achieved academically as well as socially, in fact he came a very popular member of the school.

Scott went on to Senior school, I had to take the Education to a tribunal to get the school adapted for his wheelchair. The day before the tribunal was to take place the Education decided to agree to my requests and install a lift in the school.

Scott loved school. He loved his family and all his many friends. He had a very diverse group of friends. He passed all his exams and went on to study Art at Manchester College. Amazingly, although Scotts hands had cocooned together and he had no visible fingers, he could sketch and paint beautifully. This I think also relaxed Scott and he was very proud of his work, as we all were.

Scott left college at 19. He was desperate to get a job. He even attended the job centre to beg them for help. Their help wasn't forthcoming and he decided to get himself a job. He went back to his Senior school to ask if he could help out voluntarily. He was given a day a week voluntary work in the IT department at the local girls school. Scott enjoyed this. He also helped at the local youth club, teaching kids how to draw.

 

Scott also joined the Sale United Wheelchair Football Club which he loved. He was a great player and put his all into every training session and match. Scott looked forward to days out, short breaks and holidays. His happiest times were spent in a place where dreams come true, Disneyworld. He achieved so much in his short life. He had flown on concorde, visited Florida 6 times, Disneyland Paris. He has met many famous people, none of which were a patch on him though. He lived his life to the full, he never compalined to anyone, just battled against the odds. He always had his sights set on the best and we endeavoured to provide it.

Scott contracted severe community acquired pneumonia on 26th October 2010. Although the local hospital did all they could to save him he sadly lost his battle for life on November 1st 2010. All Saints Day. Our life will be empty without him but the love and joy he gave will always fill our hearts. Scott was a remarkable young man with the bravest of hearts.

After his death, I knew I had to do something for him. I started this charity with the help of my family and closest friends, I know Scott would be proud of me and the charity. The photographs I have and the memories of all those special times help me get through every day. I want others to have the same opportunities as Scott, before its too late. I want their families to have what I have, treasured memories of a special child.

Alison Ganson (Scott's Mum) xxx

Scott Ward Schofield and his mum AlisonScott Ward Schofield with big Sombrero