We were previously helping Maddi and her family fundraise to develop a specialised Gene Therapy for Maddi’s condition of SPG15. We are now fundraising to help get Maddi to St Louis Children’s Hospital in America to have a life changing surgery called Selective Dorsal Rhizotomy (SDR).
Maddi is now 17 years old and was diagnosed over 2 years ago with SPG15 (Hereditary Spastic Paraplegia 15). Its a very rare and life limiting disease and at present Maddi is the only one in the U.K. that we know of. The disease causes paralysis of the limbs as-well as additional neurological symptoms that can affect the eyes, along with Parkinson’s and other brain abnormalities. So far Maddi is still trying to keep up her strength with PT but she can only walk a short distance before exhaustion and pain takes over and her balance has become seriously affected which causes her to fall over.
In the last year now we have been fundraising to help raise money to support Gene Therapy research for SPG15. Work is still ongoing for this therapy in hope of one day it will halt the disease, however, this research takes time and we know there will be too more damage caused to Maddi before it will happen.
The surgical procedure called Selective Dorsal Rhizotomy (SDR) is to try and give Maddi some quality of life and to hopefully keep her walking for a while longer.
SDR is not available in the UK for Maddi’s disease, but the world leading specialist Dr Park at St Louis Children’s Hospital has already treated other patients with Hereditary Spastic Paraplegia successfully and so many CP children with some fantastic results, he has suggested this would be a good option for Maddi.
SDR is a permanent life changing surgery, it takes away almost all of the spasticity. It would prevent bone deformities and contracture that can happen due to spasticity and weakness and improve function. This should then take away the pain and the stiffness that SPG15 causes.
We as a family would really need some support to help raise funds in getting Maddi to St. Louis.
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Terms and Conditions
All cash donations are held by BLF in restricted funds for Maddi’s campaign.
All fees are paid for by BLF general funds.
BLF will hold funds on behalf of Maddi and pay invoices directly.
In the event of the child not needing funds raised, BLF will retain 50% of the funds raised for their general charitable purposes such as grant making, fees for funding platforms etc
Parents will then be given a choice to donate the remaining 50% to an already registered children’s charity of their choice.