UPDATE: Sadly, my wonderful and brave little warrior, Blake McMillan, lost his battle against this cruel disease on the morning of Saturday 8th February, 2020. He fought long and hard, but the fight became too much for his damaged wee body. He left us peacefully, quietly and serenely. His passing was beautiful and everything i have hoped it would be. I just wish it hadn't been so soon. He was just weeks away from turning 8. So our boy will be FOREVER 7. 

I still want to cure this disease and will continue to support this charity, among others. Blake's life will not be in vain and he leaves behind a pretty awesome legacy. I never want people to forget my amazing little soldier. 

Many of you will know Blake by now. He was born in March 2012 and very quickly diagnosed with MeCP2 Duplication Syndrome. This condition affects only a handful of boys in Scotland and several hundred across the globe. With such few sufferers, and the condition been relatively unheard of, throughout the general public and medical fields alike, funds are being raised by a very small amount of people, generally parents, families and close friends of individuals with the condition. 

MeCP2 Duplication Syndrome is very complex, affecting almost everything about the person suffering from it. 

http://www.401project.com/mecp2-duplication-syndrome/

 Blake is now 6 years old and has never been able to sit, crawl, walk, talk or feed himself. He requires 24 hour care and this will be the case his entire life unless we can raise enough funds for the scientists to find a cure. Current research is extremely promising and this condition has been proven to be a reversible one. Experiments are being carried out in Dr Huda Zoghbi's lab at Baylor College of Medicine, Houston, Texas, and have now moved into the clinical trial planning stage with the pharmaceutical company. We hope they will be ready with the next year or so. A reversal of the condition looks likely.

http://www.401project.com/projects/ 

I call my fundraising page, Hope for Blake, because that is what I have and that is what keeps me going every day. Without hope, life would be even harder than it is already, but due to Dr Zoghbi and her amazing team, I can get up every day, love and care for my son, look into his amazing eyes and tell him we are doing everything possible to help him. 

Blake means the world to me, just as any child does to their parents. We all want the best for our children and I cannot sit back and do nothing. As parents, we fight for our children everyday in a variety of ways, but fortunately, most people do not have to watch what I do on a daily basis. I see him have seizures, struggle for breath, display frustration, watch as his sister runs around and plays and eats and talks, and he cannot do any of those things. My heart breaks thinking about what this cruel condition has robbed him of. However, it has not stolen how much love he is shown. My boy is loved by so many, and by me, so so deeply. I would do anything for him and am so desperate for him to have a better quality of life. I cannot bear the thought of losing him, I can't lose him!! So this is why I must act fast and raise as much as possible and as fast as possible. There will be a cure, it is a matter of time. Please help Blake before it is too late. 

Thank you for reading. Jenny

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