Ryan Stanford - a young boy in a tragic situation

Ryan Stanford is almost one and a half and lives in Lancaster, but he's probably not like any other little boy you've ever met. Ryan suffers from Alpers' Disease (also called Alpers' Syndrome), a serious genetic condition that has already had a huge impact on his development and will rob him of much of the happiness and fun that life has to offer. Alpers' Disease affects a tiny fraction of the population, and there is no cure.

Here on the Ryan Stanford Appeal website, we want to introduce you to Ryan and his family, to show you why Alpers' Disease is such a dreadful and oft-overlooked illness, and to help you see that it doesn't take much for you to make a difference. Please, take a little time to look around and find out more. Ryan wasn't given a choice about having this awful disease, but you can choose to help children and young adults like him.

A small boy whose story will break your heart

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.

Ryan's progress...

The rarity of Ryan's condition, and the lack of medical research carried out into Alpers' Disease, means that the consultants have predicted that Ryan will depart from us within the next two years.

As his parents Anne and David battle to secure the research funding in the hope of finding cures and treatments for Alper's Syndrome, you'll be able to read about their experiences here. There isn't anything meaningful that can be done for Ryan himself, but Anne and David hope that their experiences and struggles will benefit future sufferers of this dreadful disease.

Please check back regularly to find out more about Ryan's life and his parents' tireless campaign to raise awareness of Alpers' Syndrome on their web page at www.ryanstanfordappeal.org.uk