Save our Maddi
There are only 20 people in the world who suffer from the same condition as Maddi Thurgood.The 15 year-old from Ongar in Essex has a rare disease which is gradually paralysing her limbs and attacking her brain. She has only just been diagnosed so her family are now desperately trying to raise money to fund new research in America. Luke Hanrahan reports:
Posted by ITV London on Saturday, 20 May 2017
A few months ago Maddi was diagnosed with an extremely rare disease called SPG15 otherwise known as Spastic Paraplegia Gene 15. Unknown to us Maddi had been harbouring this condition until she reached 13 years old, at this point she started to struggle with walking.
SPG15 is classified as a motor neuron disease but it is very rare in fact at present it appears there is no one else in the UK with this and it is thought to be a possibility of less than 20 people in the world with this disease type. It is known to develop paralysis in all four limbs and also causing abnormalities in the brain. In addition if affects the peripheral nervous system impairing vision and hearing, it can also bring on early juvenile Parkinsonism. At present there is no cure!!
It is progressive autosomal recessive disease which means that both parents have passed on a mutation to the ZFYVE26 gene causing Spastic Paraplegia type 15.
The disease is taking hold and gradually disabling her legs as it progresses. We do not know the speed nor when and where it will end. We need to act quickly so we can stop destroying Maddis capabilities.
Save our Maddi is a non profit organisation which was started in 2016. The family have been searching across the globe to find some form of treatment and refuse to give up hope. The purpose of this organisation is to research and find a cure or treatment for SPG15. At present we have been given some hope for the future as Sheffield University of Neurosciences (SITRAN) have offered to research Maddis disease to hopefully produce a gene therapy strategy. This is great news for us, however we have to financial support this research program for a cure as Maddi is solely the only SPG15 patient in the U.K. at present.
Every penny counts. Your generosity will fund vital research and treatment efforts in the hope of not only stopping progression of SPG15 but also finding a cure. This will open the doors hopefully to help other similar orphan diseases.
Donate to be part of a cure.