Hello, My name is Crystal and I have a daughter named Haley. We are from a little town in IA. My daughter has cdc, She is now 21months old and doing very well. I am hoping to meet other parents and get some ideas on how to help my daughter with some of the problems she’s having. Please feel free to email me at crystalconklin@live.com I would love to hear from other parents.
Hi, I’m Anne Zettlemoyer. My daughter, Zoey (5.5year) has Cri du Chat syndrome. I was a member of the cri du chat message board, but it has been a long time. I’m one of the hosts for the 2008 5p- Society Conference in Norfolk, VA. I’m really hoping to meet many of you there. Zoey has severe mental retardation. She does not crawl, but scoots on her butt. She walks with her walker, but can’t pull up to it. She is now, finally, chewing chicken so we can stop feeding her chicken noodle baby food. She has always eaten orally. I’m very happy to say that I’m lucky in the fact that she rarely gets sick. She hasn’t had so much as a cold for 2 years.
She does wear afo’s and probably will for many years to come.
Hi. My son is Evin, he is 11 months old today. We are looking forward to meeting everyone in Norfolk this summer!! My older son, Collin, is excited too. He doesn’t think of his little brother any different than any other babies. He will turn 7 nine days before Evin turns 1. My whole family will be in attendance. Can’t wait.
Hi i have a young boy of 15, i say this as he only looks ten. He has cdc syndrome. I am writing his story from the day he was born and am nearly up to present date.The lap top takes over your life, as once you get started you cannot stop. Its very theraputic to, as i look over certain times in his life when you think that everything will never be right again you think to yourself we got through this and no you will get through anything and do anything for your child. .He has three brothers one older and two younger, as far as they are concerned he is just one of their brothers. when my third child was five he brought his friend home for the first time and introduced his big brother little brother and then my cdc son, he told his friend his name then said he’s not all there though!! that broke the ice immediately, and once he realised why he was still in nappies he was accepted. he is great pals with all my sons friends.And why not he has as much right as anyone. Hope this has not been to long and drawn out.
I have 2 beautiful daughters and my oldest, Madsion was diagnosed with CDC at nine days old. She is know 27 months old and is thriving. Having her is teaching me and my husband patience, understanding and perserverence. I would love to talk to anyone about having a child with CDC. For me, right know, and I’m sure with everyone one else, the scariest thing is not knowing what the future will bring and I would love to know about some of the older kids and see how they did throughout their childhood. Thanks!
Hi,
My name is Amy and I am the mother of a 16 month old little boy who has CDC. His name is Dylan and he is my little gift from heaven, and I feel blessed to have been given the opportunity to be his mother and entrusted with his care.
I must admit though I do not know a lot about CDC and the range in which it can effect our children. I am also looking to connect with other parents and to share our stories, obstacles, triumphs, etc…
My name is Jenny and I have a 16 year old daughter named Lauren with CDC. I would like to share stories and learn from others.
Hello
My daughter is almost 3 years old, and we can’t get her to eat anything other then her bottle. Her OT’s and I have tried everything we can think of. She’s had quite a few surgery’s in the last couple of years and she just had one three weeks ago. It seems like we get somewhere with the feedings then after a surgery she stops again. I was wondering if anyone could give me some advice, or some ideas on helping her to eat other things besides her bottle.
Hi Crystal, contact me at director@fivepminus.org, so we can talk about your daughter’s eating problems. Laura