Our 4 month son was just diagnosed with BPES

[Guest guest]

Dear Everyone,

Our 4 month old son, ph, was just diagnosed with BPES by our

pediatric ophthalmologist. He is scheduled to have surgery this next

Thursday, August 31st and we are really nervous. This condition does

not run in either of our families and we have no experience with it?

We worry about him having surgery (he is 6 months old) scaring, and

recovery. If any of you had a child with this condition that had

surgery this young, please email us at eldermarky@... or call us

at 801-378-4833 to give us any tips on the first gortex sling surgery

or your opinion on if we should wait for the surgery. We are also

seeking advice on genetic testing (when, with whom, how, does

insurance cover it?). From the posts I've read, this seems like a

great group to be involved with.