Unusually generous and kind, Tom was a gentle giant with a passion for sport and a love for his job. It’s taken Tom’s mother another 22 years, the length of her son's short lifetime, to bring herself to read about Marfan syndrome and share his story.

My son Tom was nicknamed the gentle giant. He was so kind and thoughtful and tall. He was always positive in everything he did. If there was anything he could not do he used to say “never mind I will do this instead”.

Tom worked at Morrisons Supermarket and loved his job. He played for the store’s football team and was mad about all sports. When we first found out about Tom’s condition, that he had Marfan syndrome, we could not believe it. He had never been ill, and he loved life. We had never heard of Marfan.

It came as such a shock because we did not know Tom had a heart condition. We only found out when one day he started getting out of breath. We went to the doctors and they said it was probably asthma. Then, when it happened again, we went to hospital and that’s when we found out it was Marfan syndrome.  It is so hard to understand why it was not diagnosed before. Looking back, there were signs and symptoms we feel should surely have been picked up on.

Tom was so popular and so loved. It’s so hard to accept that he is gone. I loved Tom so much. Tom had such a kind, generous manner and everyone loved him. He would do anything for anybody. He died at just 22 years old on 22 August in 2001 on the night before he was to have his heart operation.

I felt so angry that Tom was not diagnosed earlier, and I could not even bring myself to read up about Marfan syndrome. Now I feel I would like to help with a donation to help other families going through it. If talking about it helps other people going though the same as we did. I feel happy and I know Tom would say the same.

We can’t fetch Tom back but in my heart Tom is always with me and I feel so lucky I had Tom as my son.

The Marfan Trust is registered in England and Wales under charity number 328070 at c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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