On Sunday 11th September 2022, our very own Matt Tracey, will be running in The Great North Run to raise awareness and money for Unique.
Like many small charities Covid-19 has had a massive impact on fundraising efforts over the last 2 years, so now is the time for a new challenge and opportunity to help what is truly an amazing cause so close to our hearts.
Unique provides support, information, and networking to families affected by rare chromosome and gene disorders. Its mission is to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder, copy number variant or single-gene disorders associated with learning disabilities / developmental delay and to raise public awareness.
Matt's daughter, Sofia, was diagnosed in March 2018 with a 1.38Mb Chromosomal Micodeletion of 9q22.31q22.32 found as the result of a genetic microarray test. The deletion is ‘De Nevo’ which means that neither Matt or his partner has the same deletion, and therefore it is not inherited. There is also no match on any database or overlap with any known syndrome, and therefore the effect that it may have on Sofia is very much unknown.
Sofia is now near 7 years old and does face many mobility and communication challenges, however, she is the happiest little girl Matt and his partner could wish for! Every day they learn and develop with Sofia, and she always puts a smile on their face with her wonderful singing and dancing!