In March 2012 I received a call that hit me like a hammer and served as a reminder to me how lucky we are, and how much we take for granted….
One of my closest and oldest friends phoned to say that his eldest son, Rhys, had been diagnosed with a very rare hereditary condition called Stargardts Machular Dystrophy (SMD).
SMD prevents Rhys and many others like him from producing enough of the gene ABCA4. This gene is essential to produce the required levels of protein to and from the photoreceptor cells in the retina. There is currently NO CURE, meaning that over a period of time the lack of protein will causes irreversible damage to the macular cones.
In simple terms, by the time Rhys reaches his 21st birthday he will have no central vision.
I’ve seen Rhys grow up and like his father Liam, am so proud of his attitude and acceptance of what the future brings.
Hangar 54 wants to do all we can to help support ongoing research and development currently being carried out at Moorefields Eye Hospital, London. We are also committed to supporting the fantastic charities that not only assist the innocent victims of this dreadful condition, but provide help and advice to the parents throughout their traumatic and distressing journeys ahead.
Rhys and Liam have created a “bucket list” and it is Hangar 54’s aim with the support of or partners, clients and friends to do all we can to make Rhys’ dream become a reality…..