Weʼve raised £1,906 to Help raise money for Build for Shay and also Joni's Army, so we can help sick and impaired children.
- Funded on Saturday, 10th August 2019
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Shay in April 2008 was diagnosed with Pearson's Syndrome a Mitochondrial disease with no cure. Pearson syndrome is very rare, less than a hundred cases have been reported worldwide. Not many people know about Mitochondrial Disease, there are few supportive treatments relieving symptoms but at this present time there is no cure.
Our mitochondrial cells are like power stations in our bodies, supplying the energy every cell needs to function. These cells make up our organs and tissues within our bodies. Shay’s cells do not have the energy to make his body organs work properly for example, if a car does not have enough battery power, the car will not start or suddenly stop, no matter how new that car is.
Shay is 11 years old and this disease is progressing with devastating effects on his health. His one love is his Xbox and he is now having trouble holding on to things along with vision loss, hearing loss and overall muscular weakness. This is heart breaking to see and we want him to have the comfort and quality of life before it is too late.
We are raising funds to help fund the items he requires to keep him independent and have a fully enjoyable carefree life. Also to support a fantastic charity called Joni's Army, which has helped Shay achieve his goals, given him emotional support and also supported his family. This charity has been amazing, supported shay when he found it hard to take some medicine, given him great joy with the bonds they have created between each other.
Joni's Army help sick and impaired children, give them the help they need to get the medical treatment and equipment they need. They also carry out acts of kindness in the name of the beautiful young Joni who passed away aged 9yrs. Joni's Army have helped shay become a better Powerchair footballer by buying a unique Football Powerchair.
Updates appear here
Alan Murray started crowdfunding
Leave a message of support
Joanna and Brendan lehane
Aug 7, 2019
Well done Laura and Shane on your cycle 🖒🚴🚵
Jul 19, 2019
Best of luck with your ride and to your son. Saw your post on the intranet. I have a good road bike I’d be happy to lend you if you need one - I’m on aware, the AW version of Michael Jones! Good luck
Jul 18, 2019
Jul 18, 2019
Well done Alan, from Matt Tardivo at The Humidor UK.
Jul 17, 2019
Good luck mate
Jul 14, 2019
For raffle on Facebook Darren Robinson Much love
Jul 14, 2019
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