As some of you may know, George was recently diagnosed with Adrenalukodystrophy which is a rare genetic disorder primarily affecting the white matter of the central nervous system. 

ALD is caused by a genetic fault that means those that are affected are unable to process very long chain fatty acids (VLCFAs). It is thought that these VLCFAs accumulate and destroy the myelin sheath that covers the nerves in the body and brain. The myelin (white matter acts like the coating around an electric cable, and allows messages to be transmitted along nerve cells. The gene at fault in ALD is called ABCD1. The faulty gene can cause several related but different conditions such as Asymptomatic ALD (for males affected by the gene who do not yet have any symptoms). 

Boys with early stage ALD, like George,  who is also Asymptomatic and is not showing any physical symptoms at present, Stem cell transplants are the most common tried and tested treatment to halt symptoms developing. 

George will soon be undergoing a stem cell transplant at Great Ormand street Hospital in Mid - May, where he will undergo a course of chemotherapy and whereby he will more than likely loose his hair. 

In order to raise awareness for ALD and most importantly provide support for George whilst going through chemo and the transplant,  Charlie has decided to shave off all his hair. He will be looking to do this week commencing the 23rd May.

 We hope that as many of you as possible will be able to donate even just a small amount to support George on this journey. The money raised will be going to a charity that are experienced with ALD called Alex, The lukodystrophy charity….

 Here is a little bit about the charity….

Alex TLC is a trusted and experienced organisation offering support and information for all those affected by a genetic leukodystrophy. Formerly ALD Life, an internationally recognised centre of excellence for people affected by adrenoleukodystrophy and adrenomyeloneuropathy, the charity was established in 2004.Due to popular demand, we extended our services to support all leukodystrophies in 2019 and became Alex, The Leukodystrophy Charity. 

https://www.alextlc.org/

We thank you for anyone that can donate towards this cause and help to support George and his family through this journey! 

With love 

Charlie and George  xx xx