making muscle wasting history

Dear

Re: Statement of Special Education Needs for xxxxxx xxxxxx

I am writing to ask you to asses the education needs of our child, xxxx xxxxx, under section 323 of the Education Act 1996. I am making this request as is my right under section 329 of the Act.

Our son’s date of birth is xxxxx and he will be commencing xxxxx school in xxxxx / currently attends xxxxx school.

xxxxx has Duchenne Muscular Dystrophy which is a severe and degenerative muscle wasting disease. There is no cure or treatment to halt or reverse the onset of Duchenne which is predictable, progressive and life-limiting. xxxxx will see his mobility and muscle function deteriorate as he progresses through school.

Xxxxx needs a statutory assessment because even at an early age there are many areas where he will require extra and individual supervision. There are major safety implications for children with Duchenne at school. xxxxxx will need direct help and supervision with any steps, use of the toilets and the increased movement around the building, particularly because he gets tired when on his feet for any period of time. xxxxx will also require direct help in order to access the playground equipment.

The staffing numbers and ratio at xxxxx school are considerably lower than in the nursery/early years setting. However, it is important that xxxxx is provided with the necessary support and supervision to enable him to mix with his peers, given that he will not be able to physically join in with many of their games and activities.

xxxxx will continue to require physiotherapy, as well as attending hospital appointments. The frequency and duration of medical intervention is increasing and it is imperative that there is additional support within the school setting as this medical intervention is stepped up.

It is also widely known that a high proportion of boys with Duchenne Muscular Dystrophy will have learning problems. We hope that these will not affect xxxxx but we wish to be sure that the physical challenges and associated social and emotional issues he faces can be fully accommodated at his school.

Yours sincerely

Xxxxx Xxxxxx

Encs (medical and other professional reports)