Please donate to help George and our family meet the funding goals required for home adaptions to allow George freedom of access using his powered wheelchair, including specialist bathroom equipment that he needs to live with dignity as he grows.
This is your chance to help George and my family to achieve one of the hardest tasks I have ever faced, for which we would be eternally grateful. Please donate anything you can afford. Thank you to you all for your past and ongoing support!
George has a diagnosis of Ataxia Telangiectasia (A-T). A-T is a very rare, genetic, neurodegenerative disease. It is a multi-system disease that causes severe disability in young children resulting in premature death, usually lung disease or cancer, with average age of death being early to mid-twenties.
There is no cure for A-T and sadly we have lost 9 children in the UK under the age of 21 in the last 18 months.
George is now 8 years old and his condition has deteriorated, which is sadly to be expected at this age. George has also been through gruelling cancer treatments over the last few years - a common occurrence with children diagnosed with A-T. Thankfully George is now in cancer remission and he continues to be monitored for future cancers and needs to have his immunological status regularly checked.
The main symptoms of A-T that affect George are as follows:
- Progressive loss of balance, leading to frequent falls and eventual reliance on a wheelchair.
- Loss of coordination, body tremors, sudden and jerky movements, difficulty with gross & fine motor control - including chewing and swallowing.
- Slurred speech and restricted eye movements.
- Weakened immune system, leading to serious infections and possible cancers.
- Compromised and poor lung function, leading to lung infections.
- Chronic fatigue which affects George’s lung health and overall condition.
- Slow cognitive processing and response times, but no associated learning disability.
Any funds kindly donated will go direct to Sullivan's Heroes to be held until we meet our funding goals. Sullivan’s Heroes is a charity offering support and financial assistance for families raising essential funds for vital home adaptations for a disabled child, to continue to care for their child at home, safely and with dignity.
We would be eternally thankful for your support to help meet George's urgent need for home adaptions. Thank you xxx.
George suffers from a neurodegenerative condition called Ataxia Telangiectasia (A.T.) The condition causes a gradual progressive deterioration in functional abilities.
George has needed chemotherapy treatment for Lymphoblastic Leukaemia as a consequence of his condition. George has reduced upper and lower limb strength. Tremors reduce his functional ability with his speech also affected.