Tommy’s Bloom Syndrome UK exists to support families across the UK whose children are affected by Bloom Syndrome, helping them access specialist care, guidance, and long-term support at Guy's and St. Thomas' NHS Foundation Trust Rare Disease Center in London, UK.
Bloom Syndrome is a rare genetic condition that affects how the body copies and repairs DNA, leading to increased health challenges from a young age.
Children and adults with Bloom Syndrome face a 150–300 times higher cancer risk than the general population, often at much younger ages.
We help families connect with the Rare Disease Centre at Guy’s and St Thomas’ NHS Foundation Trust, ensuring children receive expert care.
We support parents in understanding the condition, navigating the NHS, and advocating for their child’s health needs.
Families are never alone. We aim to build a supportive community where parents can share experiences, advice, and hope.
For detailed medical information, visit the Bloom Syndrome Association .
Tommy was identified as small for dates during pregnancy and was born
weighing 4lb 13oz. After continued monitoring and advocacy from his health
visitor, Tommy was diagnosed with Bloom Syndrome at age five.
Despite his challenges, Tommy is a joyful little boy who loves dinosaurs,
sea animals, his pets, and especially his sister Rosie and his mum.