Blake was born with a rare and devastating neurological disorder named MECP2 Duplication Syndrome. This cruel and complex condition negatively impacts Blake’s everyday life severely, effecting his mobility, communication, breathing and feeding….things that are often taken for granted. It also causes Blake to suffer from daily seizures and recurrent, often life threatening, chest infections.
Blake needs 24 hour care and all his activities of daily living needs to be met by his mum. However, he is a contented little boy who never complains, despite his vast amount of health problems.
Blake’s family began fundraising in 2012 to support Blake’s daily needs as well as a very promising research to cure MECP2 Duplication Syndrome. The research is proving extremely promising with a very real hope of a treatment and possibly even a full reversal within the next few years.
Unfortunately, research is extremely expensive and if Blake is to stand any chance of receiving a treatment then we cannot give up fundraising. Being such a rare disease, there is no government funding available so the onus is on the family and friends of those effected, to raise the money.
Please help support Blake and his family in their quest to cure their beautiful son and all the others who suffer from this dreadful condition.
Blake’s mum Jenny carries out many different fundraising activities, including running two thrift shops and many different events. If you can help through donations or doing your own events Jenny would be delighted to hear from you.
I love helping Blake wherever I can, and am honoured to help such a beautiful little boy. Blake and others with this illness really need the funds to get the research done so that a cure is found as soon as possible, so if you can help in any way at all I know it would be appreciated in every way.
Please contact Jenny at email@example.com
Charity Number SCO46735