Vinnie 49xxxxy syndrome

Vinnie was diagnosed with a rare chromosome syndrome when he was 6 months old. 49XXXXY has an estimated prevalence of 1 in 85,000 to 1 in 100,000 and it remains one of the rarest sex chromosome disorders. The syndrome affects Vinnie both cognitively and physically, therefore making it difficult for him to reach milestones.

My name is Dawn, Vinnie’s nanny. Myself and 5 friends, Julie Moore, Helen Wragg, Cindy Broadbemt, Debbie Grayson and Helen Warren (our wing women) are doing a 174mile coast to coast bike ride from Cumbria to South Shields to raise some funds for my beautiful grandson Vinnie, to assist with his care now and in the future. Vinnie needs regular physio/other interventions and will require a walker to assist him when standing and moving. There is very little research on Vinnie’s syndrome, however The Focus Foundation hold an annual conference in America, where his fantastic mummy and daddy would be able to speak with specialists to receive specific advice and guidance to assist with Vinnie‘s progress and the opportunity to meet other families that are alike to theirs. I am also hoping to raise awareness of rare chromosome syndromes and would love the chance to help others in a similar situation.

We are very proud of Vinnie and all he has achieved so far and we are striving to support him in every possible way as grandparents, parents and friends. If you feel you can help us on our journey as a family, we would be more than grateful!

Thank you, The Astons x