We need to raise £250,000 to enable professionals at Great Ormond Street Hospital in London move forward in setting up a new clinical trial/compassionate use program to use enzyme therapy directly into the eye of children with CNL2 Batten Disease. CNL2 Batten Disease robs seemingly healthy children of their abilities one by one, and causes uncontrollable seizures until ultimately taking their life. Ollie who was once a happy, chatty, active little boy can now no longer walk, talk and is fed by a tube going directly into his stomach. Thankfully Ollie has been receiving an enzyme therapy treatment at Great Ormond Street Hospital in London for the past three years on the grounds of compassionate use which has improved his quality of life dramatically. This treatment has shown evidence in slowing down the progression of the disease but sadly it is not a cure. Thankfully Amelia was able to start the enzyme therapy treatment at a young age before the symptoms of the disease took hold. Being one of the youngest children in the world to receive this treatment Amelia’s future is unknown. At the age of seven Amelia is still able to walk, talk, eat and is now four years seizure free. However this treatment does not prevent the loss of eyesight. If successful, this treatment could slow or even prevent the loss of eyesight in children battling Battens Disease. Without this trial, beautiful Amelia will lose her eyesight and time is not on Amelia's side, this time next year may be too late! We must act now! Please take part in this wonderful raffle with fantastic home improvement prizes, all provided by kind and generous businesses from Ollie and Amelia’s wonderful local community. By buying raffle tickets, you can play a small part in saving this beautiful girls eyesight.
