Here we go again…. London Marathon take 2! I can honestly say that running the marathon last year was one of the best days of my life. So when the charity gave me the opportunity to run it again I couldn’t say no!

As most of you know now our amazing son 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, deafness and early andarthritis. It is the commonest inherited cause of retinal detachment in childhood. Stickler syndrome affects an estimated 1 in 7,500 to 9,000 newborns. When we got the news that he had Stickler Syndrome we had no idea how it would affect him and then we discovered Stickler Syndrome UK a charity set up to help families in our position. Being able to raise money for this charity is an honour.

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 in 2022 the team at Addenbrookes performed prophylaxis where they froze Tommys retinas in place to hopefully prevent a detachment 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 and donating/ it really does mean the world to me.

Alice xx