Weʼve raised £3,110 to build a Palliative Care room for Shay at home so he can spend less time in Hospital.
- Watford, United Kingdom
- Funded on Saturday, 18th February 2017
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We are all pulling together to raise funds for our little cousin Shay. 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 but no cure.
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’s mitochondrial disease is chronically progressive with no cure.
Shay has vision and hearing loss, Hyperparathyroidism and cognitive learning problems. He is 100% tube fed as to eat it takes energy and Shay has very little of that. Shay’s kidneys are affected and also his muscles. He is high risk of heart block and needs help with everyday tasks. He has a manual and electric wheelchair to help him get around.
Shay lives life to the absolute fullest and is always smiling. He is full of life and has many special people around him. Astoundingly, Shay is nearly 10 years old, he has beaten the odds and survived past 3 years old. No one knows how long they have in this world but our time with Shay is very precious. Every day, hour, minute is a blessing.
We are thankful that a grant has been given by the Council but its not enough to build the bedroom to Shay's needs.
Every child wants their own bedroom, well Shay needs his but it has to be build for his needs. Currently, he shares with Mum and Dad as they have to give him that constant care and attention. I know times are hard but even the smallest donation makes a difference. Please DONATE and/or SHARE this page . Thank you so much for helping us. xx
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Collette Blake started crowdfunding
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Feb 10, 2017
Feb 10, 2017
Sorry I couldn't make it to the cake sale yesterday Shay, hope you raised lots of money.From Jacques
Feb 9, 2017
Feb 8, 2017
Good luck Shay! :-) Miss Kingston xx
Feb 8, 2017
Feb 4, 2017
Good luck with everything Shay you amazing little man Love The Barry family xxx
Jan 20, 2017
I met Alan and he told me about Shay. I wish you all the best in your fundraising efforts but more importantly I do hope young Shay can get this room built as soon as possible.
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