Edward Hardstaff
John Mirfin is raising money for Stickler Syndrome UK
Participants: John Mirfin, Richard Hardstaff, Richard Mirfin, Martin Agnone, James Hopkin, Rob Phillips, Joe Booth
Story
They did it! Team Ted completed the Robin Hood Half Marathon on Sunday - all runners crossed the line in tact!
Edward is very lucky to have Team Ted on his side - thank you!!
Updated on Aug 10th 2011 at 10:31 PM from the JustGiving API
Edward has had a tough few days. After losing most of his vision over the weekend he had another operation on Monday. His retina on his left eye (the good one) had detached again. He is recovering well. We do not know yet what vision he is likely to have.
Updated on Jul 12th 2011 at 10:17 PM from the JustGiving API
Ted has recovered so well from his operation last week - he has been so brave over the last few months. Not sure what's next but thank you for your support everyone.
Thanks for visiting our Just Giving page.
Daddy, Grandad, 3 Uncles/Godfathers family and friends are all on board to raise awareness of Stickler Syndrome.
Edward (Ted to his friends!), who was 2 in January, was diagnosed with Stickler syndrome in October last year - at which time unbeknown to any of us he was essentially blind. Stickler Syndrome is a common but little recognised genetic disorder. One in 10,000 persons may be affected, although many medical professionals believe that the figure is considerably higher. Symptoms are variable and can present in different ways even with the same family.
When a symptom appears, it is usually treated by a health professional from one particular discipline (e.g. ophthalmologist, cleft team member, rheumatologist, or an audiologist). Unless all these professionals are aware of the wide range of symptoms which are characteristic of Stickler syndrome (e.g. high myopia, unexplained retinal detachments, early cataracts, a cleft or high-arched palate, hypermobile and/or painful joints, hearing loss etc.) a diagnosis may not be made. Even though Stickler syndrome is a genetic condition, some individuals may present with no clear family history of the condition, and once again a diagnosis can be missed.
Edward had detached Retinas in both eyes and is the youngest known case of Retinal Detachement. It goes without saying Edward was unable to tell us what was happening to him and had learned to cope with his limited vision. It was only on a family holiday in unfamiliar surroundings that his lack of sight became apparent.
Thanks to the excellent team at Addenbrookes hospital in Cambridge, Edward now has sight in his Left eye and, although more severely damaged, his Right eye remains "work in progress". He will remain significantly short sighted but we look forward to his first glasses in the near future.
Edward is a happy little boy who has undergone several operations in the last few months, with more to come. He is an inspiration to us all and the reason we are running in September.
Please sponsor us and help the Stickler Syndrome Support Group to raise awareness of Stickler syndrome amongst the medical profession; promote the value of early diagnosis for adults and children with the condition to help preserve vision, particularly the prevention of blindness in children and adults.
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So please dig deep and donate now.