Prayers answered for boy born with rare eye condition
Mom Crystal Outerbridge says her prayers have been answered after doctors discovered a potential cure for the rare condition that threatens to leave her son blind.Ms Outerbridge says she’s overjoyed that six-year-old son Zyare could be given “a new lease of life” and “hope for the future”.Zyare was born with Leber’s Congenital Amaurosis (LCA) and the gradual deterioration of his retina cells could leave him blind in about ten years.The eyesight of the football-mad youngster has already started to deteriorate as he has no night vision and struggles to see certain colours.But Ms Outerbridge has never been able to face telling Zyare the extent of his prognosis and now she hopes she will never have to.New gene replacement and stem cell therapies to manage and treat LCA are currently being developed in the US and Ms Outerbridge couldn’t be happier.She said: “It’s great news. This is what we’ve always been hoping and praying for.“I’ve just been playing the waiting game, but at last we have some good news.“I’m now hopeful that something will happen, I just want him to be okay, I want him to be healed.“I’ve never told my son what’s wrong with him, now I’m hoping I will never have to break the news to him. I feel relieved.”Eye specialists originally told Ms Outerbridge to prepare for the worst by helping to teach Zyare Braille and how to walk with a white stick.They had even warned the single mom that they may have to move overseas as Bermuda does not have any facilities for the visually-impaired.But Ms Outerbridge, of Bailey’s Bay, refused to give up hope. She said the family had just been “living day-to-day” while praying “for God to heal”.She said: “I was sort of shocked when the doctor at Children’s Hospital Boston told me about the new treatment.“I was so surprised at what I was hearing I said: ‘Can you just run that by me again?’”Anne Fulton told Ms Outerbridge that doctors are in the process of setting up a protocol, but there is lots more work to be done. She did however say the treatment “holds hope for more benefit than was previously possible”.Dr Fulton said in an e-mail to Ms Outerbridge: “The new approaches include gene replacement and stem cell therapies. It will take time in the laboratory to develop these, but, in a word, these are the most hopeful approaches that we have heard to date.”Ms Outerbridge expects to find out more about the new treatment when Zyare attends his annual check-up with specialists at Children’s Hospital Boston in August.Ms Outerbridge first noticed something wrong with Zyare when he was about six months old as he could not look up at her from his crib.In December 2005 at the New England Eye Center in Boston, Zyare was found to have nystagmus, an involuntary, rhythmical, repeated movement of the eyes. He was also found to be far-sighted and, at aged ten months, was prescribed with glasses.But just eight months later Ms Outerbridge noticed Zyare had difficulties seeing in the dark. He couldn’t see to pick up his ‘sleeping cloth’ when he dropped it.Zyare was then put under sedation to have an ERG, where contact lenses were put into his eyes to test his retina. In November 2006 his retina was found to be abnormal and he was diagnosed with LCA.But Zyare is now said to be “doing better than expected” after starting Francis Patton Primary School last September.His prescription glasses were strengthened to prepare him for his schoolwork and he received additional assistance from his teacher. But he can still become restless in the afternoon as his eyes become tired.Ms Outerbridge said: “He really likes school and seems to have adjusted quite well. He’s on track and doesn’t have any major concerns as far as learning is concerned.“He just wants to do what other children do; he doesn’t think he’s any different to them.“He’s just a normal little guy who loves playing outside. He’s loud, bubbly and very talkative.“He does try to keep taking his glasses off, but we have explained that it’s important to keep them on, even if his eyes do get tired before his body.”But Zyare’s greatest passion is football, with Ms Outerbridge saying: “He loves everything about the game.”Every Saturday morning he plays football for Hamilton Parish’s youth team, which is coached by his father Lorenzo Simmons. Zyare’s team is also Arsenal, just like his dad’s.Ms Outerbridge said: “It is a challenge for him as he has trouble seeing the white football, but he enjoys it and we don’t want to spoil his fun.”There is thought to be just one other person in Bermuda with LCA Matthew Johnson, 22, who was born blind.