We have received the request below but unfortunately the Bath panel no longer exists. If anyone is willing to travel to Bath or can has any suggestions please reply to me
My daughter Laura, who is 9 years old, has absence epilepsy and she has about 150 absences per day and each time it happens, her head rolls backwards and sometimes it rolls so far back it is actually hurting her neck. At the end of the absence, she will lift her head back up again and carry on as normal. She is in every other way a normal girl who is in mainstream school but sadly her absences are becoming quite bothersome for her due to the extension of her neck.
What I think she needs is a support made of flexible material that will inhibit her neck from extending too far backward but will not stop all other neck movement. I have just gained consent from her neurologist in London to get something designed for her if possible. It would perhaps need to be worn like a sports bra but have some sort of device extending from it to support the lower part of her head.
18 months ago, we did meet with your Bath REMAP representative and he thought something could be designed. At the time, we had not gained the support from Laura’s consultant, so we did not pursue it, but now we have gained consent, I would really like to see if something could be done. I guess realistically, her measurements would need to be taken for the design person to work out the best way for a device to work effectively, therefore, they would need to meet her.
Let me know if you have some willing person in your organisation who may be able to help us. As I said I would be more than willing to meet any costs incurred.
I really appreciate your help.