I have a 20 month old babyboy who was born with a chromosone 1 deletion (q42.3) he was born with agenesis of the corpus colosum, chiari malformation, dandy walker varient, ASD, severe coarctation of the aeorta, cleft palate, pierre robin sequence, hypospadius, he suffers from seizures, has had 4 surgeries so far due for 2 more in Feb. He's strictly g tube fed! Its been a very long and hard road but were getting through it 1 day at a time! I have 2 other healthy sons. I am 22 yr old. I would LOVE to have some1 to relate to!!!
While there might not be anyone in either this forum or in the Expert Forum I would love to pass on a wonderful site to you that you might actually be able to find someone to relate specifically to. I don't think that the Expert Forum will have many parents that you will find with the exact same Chromosome 1 deletion (specifically q42.3) but you might have luck with some mom's or parents who also have a child with other deletions or even the same one on this site:
On the side of parenting though, some of the mom's here do have children who have other chromosomal issues and also have had struggles with medical issues just as your son does. I have a son who has Down syndrome but he is healthy so far and I have not had the same struggles that you have had. I have many mom's in my local support group who have a baby or child with Ds and have had a similar journey as you. Please know that while they had initial struggles things have gotten better and brighter with each day. It is a long road, but it is a journey not many understand. I hope that you have support and also other contacts that you can talk with, and if not - feel free to message me at any time.
In addition to anything I have mentioned, please keep in mind, that while I or others may have extensive knowledge in many areas, you should always seek professional medical advice from your own physician, as it pertains to medical conditions or concerns.
Good luck, and if you have any other questions that I can help you with, please feel free to message me directly.
MedHelp Genetics Community Leader;
Children - Special Needs Community Leader;
Down syndrome Community Leader & Ds Group Forum Founder/Moderator;
MTHFR Group Forum Founder/Moderator;
Pregnancy: June 2011 Community Leader
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