I've raised £12500 to To fund selective dorsal rhizotomy surgery for Seth which is not available on the nhs for his grade of cerebral palsy.

Organised by Amanda Lilley
Donations cannot currently be made to this page
Disability support

Story

We are looking for hep to raise £12500 to fund SDR surgery (selective dorsal rhizotomy) for our son seth. Seth has cerebral palsy grade 5 and this operation is only currently funded by the nhs upto grade 3. The operation is being perfomed by seths neurosurgeon upto grade 6 with great success. The operation is to enable children with lower level cerebral palsy to walk however in children with higher level cerebral palsy it is being used to stop pain caused by spasticity. Seth has a mix of dystonia and spasticity, seth can have surgery for his dystonia on the nhs which involves a pump being fitted into his abdomin which distributes baclofen (muscle relaxant drug) through a catheter directly to his spinal cord which he has had the test for with fantastic results, this can only be fitted when seth is much bigger as his body is to small to hold the pump at present. Seths dystonic and spastic tone causes him a lot of pain which when he tries to relax to sleep is unbearable for him, therfore he doesnt sleep well and is very upset during the night. Seths tone causes so much stiffness he is unable to use his muscles correctly and simple tasks such as getting dressed can cause him real pain which will continue to worsen as he gets bigger.

Liasing with seths neurosurgeon within a year we may not even be able to get seth into his wheelchair as his tone and frustration becomes worse it will be extremley diffucult to bend seths muscles. Seth is a very bright child despite his physical disabilities so he knows what he wants to do, he wants to play with other children and he wants to run around like other children so he becomes even more frustrated and the tone then becomes worse and worse and seth is becoming incresingly upset with his pain, his quality of life is the most important thing and we cannot bear to see him in any more pain. So right now the only option we have is SDR surgery which will completely take away his spasticity and reduce his pain dramatically, it will enable him to learn how to use his leg muscles correctly, enable him to have more comfortable sleep, improve speech and upper limb muscle tone, relieve constipation and improve continence. Immediatley after surgery the spasticity is gone so that pain is gone, other results improve anything upto 2 years so this would change seths life dramatically and by then he will be big enough for his pump to work along side.

We are appealing for help to raise these funds to give Seth a better quality of life, happier and more compfortable, please help in anyway you can every penny counts. Thank you so much for taking the time to read our story.

Mandy & Lee xxx

About fundraiser

Amanda Lilley
Organiser

Donation summary

Total
£17,008.00