So for 22 years now, my daughter has fallen through every crack that exists in the medical, academic and social world. She was born with duplicated renal systems, strabismus, hearing problems, feet turned in, malformed jaws, crowded teeth, no external vaginal opening mild scoliosis, high arched palette. She has mild social delays, and learning disabilities. Her most recent IQ test scored her at 71.
I have researched for years and had come to the conclusion that she had Turner Syndrome. She is not covered under my insurance because has no diagnosis that would show her as "disabled" but I can't get that diagnosis without insurance.
I just returned from taking her to a geneticist who agreed to see her at no cost, and he does not believe that Turner Syndrome is appropriate. He is writing a clinical diagnosis of Cohen Syndrome, but it cannot be proven without testing that costs in excess of $5000.
We are a middle-income family of 4, who like many others do not have the finances to pay out of pocket for any genetic testing. I have searched the web for any clinical research that may provide test assistance and have found none.
HELP HAS to exist somewhere....