Team Tommy
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 nine 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 Tommy’s condition deteriorated on 1st July 2022, when he 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 10 weeks, he spent nearly 7 in hospital. Tommy went through so much in hospital that most won’t go through in a lifetime.
Since Tommy’s 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 don’t have to face this in the future and that Tommy’s struggle will help people suffering with this awful condition.
How to support Team Tommy
Tommy’s family would love you to support The Lily Foundation’s work. Whether it’s a one-off gift or a regular contribution, simply follow the link below to visit their JustGiving page and join the hundreds of others who have already made a difference.
Your donation will help fund groundbreaking research into mitochondrial disease, raise vital awareness and support hundreds of patients and families affected by this little-known but incurable condition.
Since 2007, The Lily Foundation have already raised over £11 million. With your help, we can continue to fight mito and find hope for everyone affected.
