Ryan was born on the 7th August 2008 and, for a while, he seemed like any other little boy. He first fell ill on the 5th May 2009 and, at less than a year old, had to spend three months in hospital, first at Royal Lancaster Infirmary, and then for a longer spell at the Royal Manchester Children's Hospital. For part of this time, he was kept in an induced coma in the Intensive Care Unit.
After many, many blood tests, Ryan was diagnosed with Alpers' Disease - also known as Alpers' Syndrome, it's a terminal genetic disorder which affects both the brain and the liver. The disease causes progressive loss of developmental milestones along with severe epilepsy, and there is neither a cure nor an effective way to slow its development. The disease always develops quickly and Ryan's parents Anne and David have been told that loss of life is likely to be within the first two years following diagnosis. Tragically, nothing can now be done for Ryan save for making him comfortable as the disease progresses.
For Ryan and his family, Alpers' Disease has changed everything. Ryan has uncontrollable seizures, is fed directly into his stomach, has extremely low muscle tone and cannot support his own head. Anne and David now have a 1 in 4 chance of any future children having Alper's Syndrome, in which case, it will again be terminal unless a cure is found in the meantime.
Alpers' Disease is thought to affect fewer than 1 in every 200,000 people, but it deeply affects anyone who has any kind of experience of it. The rarity of the disease means that it does not make headlines, which in turn means that it doesn't receive the public attention or research funding that it deserves. As a result, very little is known about it, and any treatment will come too late for Ryan.
But there is hope. By setting up the Ryan Stanford Appeal, Anne and David hope to raise money to fund research into Alpers' Disease. And with your help, there might be a chance of giving children like Ryan a brighter future.