Ryan’s August Walkathon! 

Our Ryan has felt inspired by the great Captain Tom Moore and as so, has decided that he would like to walk every day through August to raise some money for the BDFA.

This challenge will be a huge undertaking for Ryan as he is hoping to achieve a big target of 50 miles! As many of you know, Ryan has Juvenile Batten Disease and this means that as time goes by he will slowly lose all of his abilities. He is already registered as blind and his speech and movements are becoming more and more affected. His legs are growing weak and he needs more support now by way of using a walking aid and sometimes needing a wheelchair. At some point in the future he will no longer be able to walk at all, so this challenge really is a big deal to all of us and will be a massive achievement for Ryan. 

Children who have Batten Disease are born seemingly healthy with no cause for any concern but as they age they start to develop symptoms which usually leads to a lengthy process of getting diagnosed. Children lose their sight, their ability to walk and talk, suffer severe and complex epileptic seizures, memory loss and ability to swallow. Children become bed bound and completely dependent on others. This is a cruel, life limiting condition with no cure. 

The BDFA (Batten Disease Family Association) are the only UK charity supporting families with affected children and offer support and guidance to families and other professionals who are involved with the child’s care. They also take part in many research projects around the world hoping to find treatments and ultimately that all important cure. As a small charity, they receive no government funding which is why we feel the need to support them in any way we can. All anyone wants is to hear is the news that a cure has been found so we will continue to keep going for as long as we can to raise money and raise awareness of this disease. 

For a long time now, Ryan has spoken of finding a cure. More than anything, he would like to get his eyesight back. Realistically, we know this will never happen and it breaks our hearts knowing that he is suffering in this way but we do not give up hope and nor does he. Ryan copes amazingly well with all of life’s challenges and doesn’t let anything hold him back. He has the most wonderful personality and such a strength too to tackle everyday challenges with a smile on his face. We are very proud of him for wanting to take on this challenge and hope that you can support him along the way! Ryan has a Facebook, Instagram and Twitter account called ‘Ryan’s Rebellion Against Batten’s’ if you would like to follow his daily progress and we will of course post updates here too! 

Many thanks for reading, from Ryan and family xxx

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