my son remains undiagnosed!!!
hi, my names ellen and this is my first time on this site, im in a desperate bid to see if i can find some-one to help my son lee. hes 21 months old and was born prem with fetal hydrops. defying all the odds he survived this and was allowed home after 10 weeks. when he was 6months old doctors said that they believed that he had some sort of genetic condition and despite having every test under the sun he still remains undiagnosed. he has several underlining problems, from severe hypotonia to cortical blindness. his profile has also been put on the genetic website dycerne by our docs hoping for some clues as to what he has but still we know nothing. was just wondering if any of you new a really good genetic specialist who deals with rare genetic syndromes as we would travel anywhere now to get the help we need for our little boy.....
hope to hear from you soon xx