My name is Lily and I have a 2 year old son who is undiagnosed at this
time. However, yesterday the doctor told me about APECED and how this
could be a possibility for my son , Levi. Levi's story is long, but at
this point, his symptoms are failure to thrive, extrememe photophobia,
corneal cloudiness and scarring,oral and espophageal keratosis,
hearing loss. We are going to start him on growth hormone therapy. The
hardest thing for me is to not have a diagnosis and also his
photophobia. I can never take Levi outside and his eyes cause him a
great deal of pain. Is there an actual genetic test that could be done
for APECED? Does anyone have similar eye difficulties and know what
could help?

Thanks, Lily
Lily Wahl
email: nineofus@...
website: www.caringbridge.org/visit/leviwahl