Where do we start?
Well, we want to raise awareness of Batten's Disease, and more predominately, Juvenile Batten's Disease (CLN3).
Our eldest child, Ryan, was diagnosed in November 2013. We will never forget that day. We was called to London, and asked to go by ourselves. That is when we knew something was wrong. Before this, Ryan had been a perfectly healthy child. Right from birth, there had been no issues or concerns whatsoever. By the age of 7 however, we started to notice some changes. His vision was deteriorating, and at an alarming rate. The optometrists didn't seem overly concerned, so we took him to see the specialists. That is where it all unravelled for us.
When we were given his diagnosis, we was told what we had feared. That he would lose his sight. Then we given even more shocking and heartbreaking news. This awful disease means that he will have seizures, he will lose his ability to walk, talk and swallow and suffer dementia and behaviour issues. He will be completely stripped of all his abilities, becoming totally dependant on us. This disease is life limiting. He has a life expectancy of between 15 and 25 years old. To be told that your child will die, is utterly soul destroying. No words can express how we feel. To look at him now, you just couldn't believe it.
This disease has already taken some of him. He has little vision left now, and has had a few seizures. He is a little fighter though. He fights through every day with an unbelievable strength that makes us so so proud as parents.
We want to raise awareness as there are not many people who know about this, including doctors and specialists. The charity BDFA has been wonderfully supportive to us as a family. They support UK families and fund research which is vital for finding treatments and cures, which as of today, there aren't any. We want to be a voice for them, so that more research can be done and more families can be reached.
We will be doing many different fundraising events through the year, so please keep checking, and if you can donate, then we want to say a warm thank you from the bottom of our hearts.
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