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Forum
-> Children's Health
mirikush
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 Sat, Jun 05 2010, 10:30 pm
My 10 year old was just diagnosed 2 days ago with Stargardts disease or juvenile macular dystrophy. It's genetic and my other children have a 1 in 4 chance of developing the disease. My 10 year old is my 3rd eldest child. Is there anyone out there with experience with this disease. The specialist said that his eyesight is unlikely to get worse but at the moment with no cure etc it is not likely to improve. I'm guessing as it stands he is legally blind as he will not be able to legally drive a vehicle when he is older. He took that surprisingly well and am very proup of my sons attitude.
Is there anyone else out there in Imamother land who has had experience with this condition? My biggest concern is his learning. He is behind and we always assumed it was a learning disability. My eldest is very bright but my second eldest has a learning disability.
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happyone
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Sun, Jun 06 2010, 1:16 am
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Hugs. This must be so difficult for you. You should join frrumgenetics@yahoogroups.com it's a group of frum mother dealing with children with genetic illness. In addition, you might want to contact Chaim Jalas from GENErations at Bonei Olam - 718-301-9774. He might be able to connect you with another family dealing with the same condition. Chai Lifeline 212-465-1300, might also have a database of families that have dealt or are dealing with this or a similar condition to provide support for you and your family.
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mirikush
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Sun, Jun 06 2010, 3:12 am
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HI...thanks for the reply. We are in Australia so I don't know if there is any point calling him. It is all so new and a surprise. Both of us no of no one with this condition on either side of our families. But I guess as carriers this is something that could have remained dormant for generations. But we remain positive. They say in 10 years there may be a cure or at least a way of stopping the disease before it progresses. We have 2 children with asd also so this is just another thing to live with. In the greater scheme of things it could have been much worse.
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amother
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Mon, Jun 07 2010, 1:54 pm
The only advice I can offer is to get a contact with Bonei Olam's genetic program. They are very knowledgeable and are in contact with many geneticists around the world.
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