Our son Thomas (Tommy) was a fit and healthy little boy, full of life and joy. He always had a smile on his face. At only 15 months old in April 2022 Tommy suffered his first seizure completely out of the blue. A few weeks later after time in intensive care he was diagnosed with a POLG related mitochondrial disease.

This resulted in epileptic seizures, and he lost most of the ability to support his own body. He was on 9 medications a day, a new diet and was entirely NG fed. This was very sudden and there were no warning signs. However, Tommy still found lots of joy in books, Thomas the tank engine and being with his family. Given his terrible position he was still full of happiness and kisses.

After brief stints away from the hospital Tommys condition deteriorated on the 1st of July 2022, he had reached Status Epilepticus. He passed away peacefully that evening with us. This disease is incredibly cruel and has taken our happy healthy son away from us within 3 months without warning. In his last ten weeks he spent nearly seven in hospital. Tommy went through so much in hospital that most wont go through in a lifetime.

Since Tommys illness our lives have been forever changed and whilst we miss him every day, we want his legacy to be one which Tommy would have been proud of. Tommy showed so much love to everyone he met regardless of who they were and always made people happy.

We want to pass the spirit of Tommy on and for that we want to start helping organisations such as the Lily Foundation. By aiding the fight against mitochondrial diseases, we hope other families do not have to face this in the future and that Tommys struggle will help people suffering with this awful condition.

Love Ryan and Hannah

We want to say a big thank you to everyone who donated to Tommy's Tribute page, together in his memory you have raised over £5000 for The Lily Foundation. https://thomaskeen.muchloved.com/