Sky Dive to support Josh's MLD journey

Hi I’m Jo and today (Sunday 14th April 2024) I completed a tandem Sky Dive from 15,000ft...I thought this was pretty brave but nowhere near as brave as Josh and his amazing family.

In 2021 following concerns raised from his family Josh underwent many tests which showed he was lacking the enzyme Arylsulfatase-A. This enzyme maintains the myelin sheath in the nervous system, which is the covering what protects the nerves throughout the brain and body. Without this enzyme, sulfatides build up, eventually destroying the myelin sheath and the nerves in the brain cease to function properly. In 2021 Josh was given the diagnosis of Juvenile MLD. Juvenile MLD is a rare, life-limiting disease which typically affects 1 in 140,000 children.

At present, there sadly is no cure.

My daughter Georgia started Reception at Ottershaw Infant School with Josh in 2019, they were in the same classed and shared those precious early school days making memories. Sadly after the deterioration of his mobility, incontinence and other everyday functions, his parents had to make the difficult decision to end his time at Ottershaw and take him out of school altogether

I wanted to use this opportunity to not only help raise awareness of this terrible disease but also raise money to support Josh & his family through this journey. Recently they had to purchase a new wheelchair to meet Josh's needs & any donation you can give supports them to be able to continue to do this.

Thank You!