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You Can Change a LifeHow your money can work to help people with SMA |
Harry has the incurable neuromuscular condition Spinal Muscular Atrophy (SMA Type 2). He was born a healthy, happy child, but at 18 months old, it was noticed that he couldn't take weight properly on his ankles. Tests were carried out and his distraught parents given the news that their child had a potentially life limiting condition. At the time he seemed perfectly well, but within 6 months he had stopped crawling.Children with SMA Type 2 feel sensations such as touch, temperature and pain, but gradually their arm, leg, neck and chest muscles waste away leaving the child with little strength. SMA is a genetic disease and siblings have a one in four chance of having it too. Harry's six-week-old brother was lucky - he was clear.
Harry is an intelligent boy and SMA will not affect his mental skills, but he is trapped in a seriously weakened body. But - for Harry life can still be FUN! At three and a half, he has lots of able-bodied friends, attends mainstream nursery school, but most of all he has FREEDOM!
His life has been dramatically altered thanks to a range of equipment that gives him independence and a much better quality of life. The Jennifer Trust for SMA gives grants to children like Harry for other equipment; £800 will provide a bed system to help him sleep comfortably. £8,000 can provide a through-floor lift and remote control. An outdoor powered wheelchair, vital for independence, costs up to £10,000.
Jennifer was admitted to hospital at four months 'for a check up' because her parents were concerned that she had little movement. Four days later, on a Friday night, she was discharged after the paediatrician had told her parents that she had Severe SMA (Type 1). They were told that it was genetic and there would be a one in four risk that any subsequent children would carry the gene, that there was no treatment and she would die within months.They left the hospital devastated, with no information and absolutely no understanding of SMA and what it really was. All they knew was that their beautiful little daughter was going to die from a disease that they and many others had never heard about. There was nothing they could do to save her. They had never felt such isolation, terror or despair. Since 1985 The Jennifer Trust has been there for parents in this traumatic situation. It offers friendship, support, advice and much more.
Catherine is currently studying for a fine arts degree at university. This is a great achievement for her because her mobility is severely restricted. This term, thanks to a donation towards the costs of her Storm wheelchair, she was able to travel to America by plane and take part in the cultural exchange programme.During 1996, The Jennifer Trust provided eight powered chairs. There is a story to every one of them, from the little boy in Northern Ireland who got his chair in time for Christmas to the baby with her specially designed Snug Seat, who can now travel safely by car.
© JTSMA 1998