I’d like to share a little bit about why I’ve decided to run the London marathon after vowing ‘never again’ 10 years ago! I recently learned that my friends (Steve and Julie) little girl has been diagnosed with Mitochondrial DNA deletion and Kearns-Sayre syndrome. Something I knew nothing about until now. Mitochondrial disease claims more lives than all childhood cancers combined, and there is currently no cure.
But there is hope. 10 years ago no research into this condition was being done, today there are 8 drug companies trailing 10 different drugs and one of those being trialed could help Alia and her specific condition.
Alia is under the observation of Newcastle mitochondrial research facility which has the best Mito research lab in the UK together with a bio unit in Cambridge as well as doctors in Brazil and the United States. She currently has 15 doctors all monitoring her vitals and she's on the list for any experimental drugs that become available.
Alia is 12, she is a fantastic big sister and an amazing, talented, beautiful little girl with a fabulous sense of humour. The Lily Foundation help fund research in Newcastle and support her family. They desperately need funds to continue their support and ultimately find a cure.
Please help me raise funds for Alia and the Lily Foundation. We need to find a cure and time is of the essence. Thank you!
Amy Xx