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 have had a busy 6 months fundraising for Shay's suite, a final push to make his dreams a reality. We would like to thank everyone who has donated whether it be donations, helping with fundraising events, supporting Shay, without you all we wouldn't be so close to

starting his build.

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 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. The commonest parts of the body affected are those that have the highest energy demands; brain, muscle, liver, heart and kidney, Shay’s mitochondrial disease is chronically progressive with no cure.

Pearson’s Syndrome characteristically presents in early infancy with pallor, failure to thrive, pancytopenia and diarrhoea with Additional manifestations. Most infants die before age 3, often due to unremitting metabolic acidosis, infection, or liver failure. Those few individuals who can be medically supported through infancy may experience a full recovery of marrow and pancreatic function. Shay needed red blood transfusions every four weeks for 15 months. Shay eventually morphed from Pearson's syndrome to Kearns-Sayre syndrome with the development of ptosis, incoordination, mental retardation, episodic coma and this can affect any part of the body.

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 very high risk of heart block and needs help with everyday tasks. He has a manual and electric wheelchair to help him get around. As each month passes, Shay is getting weaker and weaker. He is now deciding not to play outside due to the cold and it’s heart rendering to see him making these decisions for himself.

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.