Myself, Dan Collett and Mikee Clea, will be climbing Mt. Kilimanjaro in September 2019 for my 7 year old nephew, Charlie. 

Charlie has Tuberous Sclerosis Complex (Type 2). TSC is a rare multisystem genetic disease. It causes multiple benign tumours to grow on the brain and other large and important organs such as heart, kidneys, brain, lungs, eyes and skin. In the year of 2011 when Charlie was born, the odds for children being diagnosed at birth with this disease was 1 : 50,000.

His physical ability is limited; he can only walk for short periods at a time so depends on his specialised wheelchair daily. Charlie also suffers with multiple seizures. With the help of medication, these have decreased to around 10 seizures per day. TSC is, at present, an incurable disease, which is also threatened with the possibility of SUDEP, (Sudden Death by Epilepsy).

Along with TSC, Charlie has also been diagnosed with Polycystic Kidney Disease. With a combination of PKD and TSC, Charlie will inevitably need a kidney transplant due to the tumours and cysts when he is older. Charlie has also been diagnosed with Epilepsy, Autism, ADHD and Global Development Delay. Each of these diseases are triggered by his Type 2 of TSC.

To date, trial drugs have been developed and tested on a small handful of children in hope to reduce the size of tumours on the brain. Our aim is to help continue to provide funding for trial drugs like these and more research to help find a cure.

Despite the fact that Charlie is faced with all these difficulties and complications, Charlie is the happiest boy you will ever meet. His laugh is ridiculously infectious and he lights up every room! He loves being surrounded by his family, windmills, trains and Halloween!

Thank you for taking the time to read our fundraiser.