Tranquility is pleased to announce that our next charity melt is for Charlie Walton. Charlie was diagnosed with MECP2 duplication syndrome in January of this year after his family became concerned about his developmental delays.
He was 15 months old at the time, he is now approaching 2 (in October) yet still unable to crawl, walk talk or maintain any eye contact. The condition is so rare that no one really has anything to compare to, so Charlies future is just a waiting game. The condition has onset of seizures at approximately the age of five which unfortunately then causes these little boys to lose any of the skills they had previously acquired.
The life expectancy is a maximum of around 25 however this condition makes them prone to respiratory infections & unfortunately many succumb to the condition before the age of 10 due to pneumonia/sepsis etc.
The lady that discovered this condition in 2005 is currently working on a cure to reduce the size of the MECP2 gene which is causing all the issues. It has been successful in mice and they are currently working towards clinical trials. The research is taking place in Houston, Texas but is privately funded so needs constant funding to get this research to trial stage.
Funds raised from the go fund me account will be split between making precious memories with Charlie, going towards specialist equipment required for Charlie in the future and most importantly towards the research taking place as explained above.
For Charlies go fund me please visit: https://www.gofundme.com/9dss3z-give-charlie-a-chance