Hi my name is Nadia and we are fundraising for my daughter Dua who is 3 years old.Our beautiful daughter has been diagnosed with a very rare degenerative genetic disorder known as spg50 and doesnt walk or talk. Dua is one of two children in the UK with spg50. quadriplegic by the age of 20 and wheelchair dependent by the age of 10 are words no parents wants to hear. We want to continue to see progression , however unfortunately this cruel disease will cause paralysis in her limbs . If Dua gets on the Trial for gene therapy we are hoping to see a halt to her symptoms worsening and instead we will continue to see progression. It's hard to see your child deteriorate. 
 
SPG50, or Spastic Paraplegia Type 50, is known to affect only around 80 people worldwide. It is a Ultra-Rare Neurodegenerative disease that slowly takes away children with the diseases ability to use their legs, hands and mental capacity.Today there is not treatment or drug to help these children. Dua has one protein missing just one but enough to cause such dire consequences. 

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Understandably, the diagnosis has shattered us , we always knew there was something but we never imagined it would an awful disease such as this one where our daughter will lose all her skills . We cannot imagine our happy , smiley Dua losing that beautiful smile of hers or not recognising us. 
 
Whilst there is no cure at present , a superhero Terry Pirovolakis has made it his mission to find a treatment and clinical trials have begun in USA for gene therapy. He had the medicine created for his son by raising 3million dollars. His son has had the first dose.The FDA have approved this treatment and Dua has been registered and 5 other children have had it with positive results. The cost of this is huge however and something that we will not be able to afford without everyones help .£3 million pounds are needed for the third and final trials which we are hoping Dua will be chosen on. It will cost around £250,000 per child which is the target we have set. 
 
In the event Dua does not get onto the clinical trials , we are hoping the medicine becomes available in a few years and we can fund this with this money .In the meantime Dua needs lots of therapies to retain her spasticity. You can read more at www.curespg50.com 
 
We really need everyones help on gathering these funds so that our daughter is given a chance to be treated and in the meantime to give her the best chance in retaining movement in her body. 
 
Dua needs this treatment at the earliest opportunity. We have no support from the NHS or the likes of Gosh in funding these trials or the therapy so it's up to all the parents to collectively raise the money to save our children. 
 
if you can afford to please consider donating to save our childs life and those children affected by spg50 so that no parents have to hear 'there is no treatment'

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Help save Dua-treating SPG50

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Help save Dua-treating SPG50

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