Please support me on my road to SDR in the USA
Nelson / Tasman
My name is Damin, I'm 6 years old and my Mummy and Daddy have created this page in the hopes to support me in getting the life changing operation called Selective Dorsal Rhizotomy in the USA in July 2018.
When I was 9months old I was diagnosed with Right Side Hemiplegia, which is a type of Cerebral Palsy. This means that I have extremely high muscle tone and lack of control in the affected side of the body, rather like the effects of a stroke.
Because hemiplegia is caused by injury to the brain, it is not just motor development that is affected, I get tired more easily, I am sometimes hard to understand so I get very frustrated and the effort involved in simple tasks can be considerable for me.
Hemiplegia cannot be cured, but a lot can be done to minimise its effects and help me achieve my potential, I've had brain scans to monitor change, Botulinum Toxin injections in my leg to help me relax, I have a speech therapist to work on pronouncing my words right and I have been seeing my physio therapist since I was 9 months old.
When Mum and Dad heard about Selective Dorsal Rhizotomy they knew they had to do all they can to get me there!
The surgery is a little scary as it involves opening up my lower spinal cord. The nerves are separated then identified via an electrical stimulation. Following identification, certain sensory nerve fibers in the spinal cord are cut. The nerves that lead to too much muscle tone, which is a condition of cerebral palsy and spasticity, are then cut.
With spasticity relieved, underlying muscle groups can start working more normally so that mobility and function improve. This helps prevent the extreme muscle scarring - known as contractures - plus the joint and bone deformities that children with cerebral palsy can develop if spasticity continues over a long period of time.
My name is Mikayla and I am Damins mum. Hoping to get SDR to be able to change both Damins and our family life for the better.
This surgery is currently not available in NZ which means no NZ funding so, please if you can it would mean the world for us if you can support me in the long road ahead to surgery and rehabilitation.
Follow my journey at Damins road to SDR on Facebook. Thank you for taking the time to read my story and supporting me :)
Your message will be displayed on the page and emailed to the donor.
Your new message will also be emailed to the donor.
Saving a blank entry will delete the current comment.