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My first child was born on May 4, 2009 with a rare genetic condition known as Fraser's Syndrome. His eyes are covered by skin and, according to our surgeon, the MRI's suggest that his globes are useless.
I am going to need a second opinion before I give up on the little man's sight. I am willing to travel anywhere from Houston, and pay any amount. What city has the best ocular surgeons?
Thank you to anyone with a suggestion.
I live in the Midwest. I can recommend Northwestern Memorial Hospital in Chicago. That's where all my VHL doctor's are at. They are not a pediatric hospital but they have been screening my 8 yr. old's eyes for years. They are affiliated with Children's Memorial Hospital. Northwestern doctors can see patients at Children's Memorial, and vice versa. My Northwestern ophthamologists work very closely with Dr. Chew of NIH. Dr. Chew would be worth contacting. Please contact me if you are interested in more information.
Best of hope to your little guy.
Marie
Prior declarations uselessness doctor has to be able to account for state of every single component of eye, especially retina and optical nerve, cornea can be repaired to some extent or replaced, lens can easily be replaced…..So I suggest that you should just make doctor explain everything starting from the state of things up to the options and costs.
I commend you for being your son's best advocate!
No one else cares as much as you do...never give up.
Good luck, I pray you find what is best for him.
Michelle
There are many doctors world wide, but wht don't you consolt wityh tjhe National Eye Institute in Betetjhesda Md. My son had surgeryn with Dr Stanley Chang at Columbia Presbetterian in NYC I wish you good luck
Thanks for your reply. Its great to hear encouraging words from a person that truely understands what his life may be like.
I have an appointment with an ocular surgeon this Friday. He is very skilled and respected, but he came off as slightly indifferent during our previous appointment. I have been told the best eye doctors are in the Midwest.
Thanks again.
Hi, I am sorry to hear about your son's condition. I don't know that much about Frazier's but I do know that blind people lead full and productive lives. I am one myself. As far as doctor's go you might want to contact a local opthamologist. They can send your information to more knowledgeable doctors and get a second opinion without you having to go all over the place. If you want to actually take your son somewhere I would look online at the university hospitals. You might be able to find someone specializing in your son's condition.
Good Luck. I hope the best for your son but remember that it is not the worst thing in the world to be blind.
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