BEE my SALVATION ❤️

Our gorgeous boy Brynley has recently been diagnosed with a a rare genetic disorder called Metachromatic leukodystrophy (MLD), this affects his brain. 
     This illness destroys the protective fatty layer surrounding his nerves, gradually affecting both his intellectual and motor function. At present there is no cure and MLD is a life limiting condition, the only treatment is supportive and focused on symptomatic relief.

     We have just heard of a new trial in America called Substraction Reduction Therapy, its not a given that Bee can have this but it has given our family some hope. Life is full of “what if’s” at the moment and IF Bee gets offered this treatment I want to be ready. I want to give my son every chance possible of delaying his symptoms and receiving treatment that could possibly help him. To help us achieve this we need some help from you, members of the public and our local community.

     Our world has been turned upside down and as a family we are broken knowing that his future health and well-being has been taken out of our hands. We are determined to stand and fight for any treatment that might help Bee and we would appreciate your help too - we are grateful of any donation. 

Donations will be used to:
- ease the financial-strain of medical treatment
-to assist with travel expenses to and from hospitals
- possibly help make some of Brynley’s wishes come true, one of which is to visit the real Santa at Lapland and stay in a log cabin 

Click on the link below to see Bee’s story in the Wales Online ❤️

https://www.walesonline.co.uk/news/wales-news/we-thought-six-year-old-19906032