Its not about reaching a target but getting some awareness of this condition out into the world however anything raise would be amazing!

In october i will be running the birmingham half marathon to raise money to help support my nephews disability. Not many people know about my nephew they may know I have a nephew but are totally unaware of joshs condition.

Josh was born with and has a diagnosis of MCT8 Deficiency also known as Allen Herndon Dudley Syndrome. This is an Ultra Rare Condition and effect 270 boys world wide so far.

Allan-Herndon-Dudley syndrome is a rare disorder of brain development that causes moderate to severe intellectual disability and problems with movement. This condition, which occurs exclusively in males, disrupts development from before birth. Although affected males have impaired speech and a limited ability to communicate, they seem to enjoy interaction with other people.

Most children with Allan-Herndon-Dudley syndrome have weak muscle tone (hypotonia) and underdevelopment of many muscles (muscle hypoplasia). As they get older, they usually develop joint deformities called contractures, which restrict the movement of certain joints. Abnormal muscle stiffness (spasticity), muscle weakness, and involuntary movements of the arms and legs also limit mobility. As a result, many people with Allan-Herndon-Dudley syndrome are unable to walk independently and become wheelchair-dependent

Joshua can eat orally but is unable to feed himself due to lack of coordination, he is unable to talk, sit unaided, crawl or walk. There is no cure for this condition only medications and physical therapy that can improve his quality if life.

Josh is now 6 and despite his condition and lack of capabilities our family has tried to make his childhood as “normal” as possible for him. Josh attends a special educational school where he gets tailored education. Although Josh is unable to tell us what he likes or how he feels we are able to understand him through his cheeky grin and laugh, whenever he hears he favourite songs or sees football or monster trucks on the tele he becomes very vocal and you can see the joy in his face.

Sadly there is no cure or solution to Josh’s problem so as a family it is down to us to make his life as “normal” as possible. Josh has already had adaptations made to his home with special beds and baths installed through what little funding is available. This money isn’t an endless pot of money and Josh still needs more adaptations to his home. For instance he will need a ramp installed into his garden so he can access the garden as well as his mom needing a ramp installed into her vehicle for when he gets to big to sit in a car seat.

I am not just running the half marathon to raise money but to provide more awareness around Josh’s very rare condition. I know with what’s going on in the world asking for donations may be the last thing you want to hear but I just wanted to Thank you for taking the time to read this and thank you for any donation you can make

Thanks

Craig & Josh