Dregan has had thick luscious hair his whole life. And then the disease took over, and is now taking his hair. One of the cruel effects of Myotonic Dystrophy is 'early onset male pattern balding'. Dregan has been fighting this since he was around 14, but now he is 17 and his hair is simply coming out in when it is washed, brushed or simply in the morning on his pillow. This is upsetting for Dregan to see, because he doesn't understand, so, we are trying to make something positive of it.

Dregan has decided to CUT HIS HAIR, and donate it to 'Little Princess Trust' This wonderful charity provides real hair wigs free of charge to boys and girls across the UK and Ireland that have sadly lost their own hair due to cancer treatment and other illnesses.

Why? 'Because Kids with Cancer is sad' - said Dregan. To say this simple comment broke my heart is an understatement. Dregan himself has a life-threatening illness, yet he is thinking of others, and not the fact that he is actually losing his own hair.

Dregan has Congenital Myotonic Dystrophy, a life limiting degenerative condition, which affects every part of his body. It is a form of Muscular Dystrophy, which means his muscles waste away over time, but it is also known to be the most complex medical condition known to medicine, and actually affects so much more than 'just his muscles'

Dregans respiratory, cardiac, gastrointestinal systems are all affected and deteriorating. He is now PEG fed through a tube in his tummy as he no longer has a safe swallow, due to the progression of the disease. Dregan is cognitively affected and has Autism and severe learning disability.

The money we raise will go towards helping Dregans parents go to the MDF/IDMC conferences in September, which will enable us to meet with other families, gain support and information, and also to have a Fight Fund presence at the medical conference. A great opportunity to bring worldwide knowledge and research to UK families.