Olly, 10, pictured with his mum Claire, had to wait three years to be diagnosed with TUBB4A leukodystrophyA 10-year-old boy with a currently incurable brain disease is feeling hopeful about a new treatment.The condition causes disruption to the signals between nerve cells in the brain and means Olly, who was three years old when he was diagnosed in 2015, is blind and non-verbal.
Claire, 40, said: "Finding out Olly suffered from a life-threatening illness came as a total surprise, and of course it was devastating news. SynaptixBio has teamed up with a hospital in Philadelphia and secured £13.2m in funding to try to develop a drug to help those with the condition. It is hoped the drug, which is currently scheduled to go to clinical trials next year, could potentially reduce the amount of mutated protein that causes H-ABC.