Joshuas Warriors
A group of Jon's colleagues (including Jon)
are hoping to raise money to help out with any home improvements needed in the house and make as many memories as possible.
So we are all running the Bristol 10k on 9th September 2021.
We all have different abilities. Some who have never run before others who have completed marathons.
Our targets range from just completing it to getting a personal best.
Here's a little back story on Josh and information of what the money donated will go towards -
A simple eye test showed reduced vision when he was just five and due to macular dystrophy he was registered blind within the next few months. Sadly this wasn't the end of the story and after he started to forget things like how to climb into bed or his grandparents' voices, genetic testing was undertaken and he was tragically diagnosed with an extremely rare diagnosis of cln6 Batten Disease just before the first lock down in January 2020. This is a terminal condition of childhood dementia which will see him lose all his abilities and has a life expectancy of 8-12 yrs old. He is already 9 and now relies on help with a wheelchair and has slow speech. Every day is emotionally and physically challenging on this journey.There is currently no cure for any type of Batten Disease. There are 13 different types and only 1 with a funded proven treatment on the NHS. Research is being undertaken to investigate possible other treatments, one in particular with a promising medication for cln6 which we hope Joshua will be a part of but time is not on our side and COVID has slowed all research opportunities. We are having to completely redesign our home to allow for hoists and wheelchair access but also want to make as many family memories as we can with Joshua and our other son Andrew.
The money raised will contribute to all of the above and on behalf of my family, Thank you from the bottom of our hearts.
Please give what you can and share the link with others. We will regularly update on our progress through out the month.