My 4 year old daughter was born with a duplication of chromosome 5p, club feet and Hydrocephalus. She is nonverbal, doesn't walk and is physically and mentally impaired. It's been a tough few years, but she's come an incredible long way and surprises us constantly with new achievements and changes in behavior. As you all can relate, the fact of not knowing what to expect, especially as it's such a rare chromosomal abnormality, is nerve wracking. I am scared and nervous of what the future might hold. I am looking for parents of kids with the same chromosomal abnormality, that would like to share with me their child's story, experiences, fears, worries, achievements, reached milestones and hopes.
Simply knowing that there are other families out there that can relate and understand would mean a lot to me.