Tommy was born with a genetic condition
Aaron Cox Founder and Managing Director at David Astburys Estate Agents is helping to raise funds in aid of little ‘Tommy’. Aaron comments “I have a great friend Steve whose grandson Tommy was born with a genetic condition called Stickler Syndrome. Tommys mum Alice was blessed with twin boys in 2018, what many don’t know is that Tommy was born with the genetic condition”.
When Alice got the news that Tommy had Stickler Syndrome they had no idea how it would affect him and they discovered Stickler Syndrome UK, set up by the late Wendy Huges to help families in their position. They 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.
Tommys mum Alice organised a Race Night on 2nd February in Hertford raising a staggering £7,861. Alice will not stop there as the next fundraiser for Tommy is the London Marathon on 21st April 2024.
Agents Giving and the Guild of Property Professionals are delighted to support Stickers Syndrome Charity, good luck Alice with the London Marathon.
It is the commonest inherited cause of retinal detachment in childhood
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.
Last year the team at Addenbrookes performed prophylaxis where they froze Tommys retinas in place to hopefully prevent a detractment 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.
