My son who is 27 months was just recently diagnosed with opitz syndrome this has been a very rocky road for us he has been sick ever since he was born but only had a some of the symptoms of opitz so it was left undiagnosed instead we were sent to multiple specialists who kept telling us nothing was wrong with him and kept putting us through multiple experimental procedures to rule out other things.. I am sharing my story to see if anyone else can help me cope with his diagnosis because his doctors were unable to give us alot of information about his syndrome. He currently has a feeding tube in his stomach and has therapists coming to the home that are helping him. I am just so overwhelmed right now and im hoping our story may help others.
Thank you,
Crystal Hutchins