Thanks for taking the time to visit my JustGiving page. I am running the London Marthon in April for Stickler Syndome UK.

As you know we were blessed with twin boys in 2018, what many don’t know is that Tommy was born with a genetic condition called Stickler Syndrome.

Stickler syndrome (SS) is a dominantly inherited disorder of connective tissue associated with retinal detachment, myopia (short-sight), cleft palate, hearing loss and early onset arthritis. It is the commonest inherited cause of retinal detachment in childhood. Stickler syndrome affects an estimated 1 in 7,500 to 9,000 newborns.However neither of us have Sticklers which means in Tommy’s case it was just a gene mutation. 

When the boys were born we had no idea something was wrong until after a night of trying to get him to feed it was discovered Tommy had a  soft cleft palate, this was followed with many tests and late night googling from us to determine what could have caused it. 

When we got the news that he had Stickler Syndrome we had no idea how it would affect him (que more googling!) and we discovered Stickler Syndrome UK, set up my the late Wendy Huges to help families in our position. We are extremely fortunate to have the highly specialised service for Stickler diagnosis and treatment at Addenbrookes Hospital in Cambridge. The team are fantastic and are constantly striving and researching Sticklers and ways to help patients. 

Tommy had his soft cleft palate repaired in 2019 and Chris rode from London to Brighton to raise money for Clapa and the amazing work that they do for children around the world. Now it’s my time to don the Lycra to raise money and awareness for Sticklers and the charity that helped us.

Last year the team at Addenbrookes performed prophylaxis where they froze Tommys retinas in place to hopefully prevent a detatment that could lead to blindness. It’s this type of research and treatment that make a real difference and it’s crucial that they continue to receive the funds to continue their work. 

Thank you for reading 

Alice xx

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