Spinal muscular atrophy (SMA) is an inherited condition which affects the anterior horn nerve cells in the spinal cord. It is rare, and occurs in three versions in childhood.
Type one is diagnosed in babies who never sit up or hold their head up and do not live beyond the age of two. In type two, the child has the ability to sit up and hold their head up but will never walk. Type three, or “mild” SMA, is usually diagnosed after 18 months but is sometimes detected earlier. The child can walk, but has a general muscle weakness which may not be understood at school or by other people. However, the weakness may begin to present more problems for such children as they are growing up.
Harry is type two, and a charming, bright, articulate, five-year-old. He has very little use of his lower body and sits in an electric wheelchair. He is skilful with his chair and can whizz it around the adapted, wide classroom, position it under his high desk, or steer it out to the playground. He can use his hands, although they are becoming weaker. Harry’s sunny personality is a tremendous asset in coping with the sort of obstacles that confront him, as is the support he has from his special helpers at school and from the Jennifer Trust, a charity which provides information and advice for people with SMA and their families, and for professionals.
The Aiding Communication in Education centre at the Nuffield Hospital, Oxford updates his computer regularly, as his capabilities change. Generally, for Harry, change means a loss of ability. The John Radcliffe Hospital in Oxford monitors his progress, and a physiotherapist treats him twice a week. Harry’s mother says: “We’ve been lucky that his helper and the school have been prepared to try anything. It has given him a lot more confidence about asking for help. They treat him the same as the others.”
The many adults involved with looking after Harry can get information and support from the Jennifer Trust. Many families with an SMA child call the charity about education matters, and the trust can supply information for teachers. It aims to ensure that everyone can work to the same purpose and with the same knowledge.
* The Jennifer Trust, 29B Avon House, New Broad Street, Stratford-upon-Avon, Warwickshire CV37 6HW. Tel: 01789 267520
