Children - Special Needs Community
chromosone 1 deletion!!!!
About This Community:

This patient support community is for discussions relating to learning and education, motor and movement, neurological brain injury, premature birth, sensory integration, speech and communication, and vision impairment list groups.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

chromosone 1 deletion!!!!

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!!!
Related Discussions
5 Comments Post a Comment
Blank
535822_tn?1389452880
you may get some feedback if you go to the expert/doctor forums good luck
Blank
1227139_tn?1367231533
Hello Mommyof3boyssm,

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:  
www.rarechromo.org

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.

Sincerely,
Sandi (Dragon1973)
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
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Children - Special Needs Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
How to Silence Your Inner Critic an...
13 hrs ago by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eaters: How to Silence Yo...
Mar 26 by Roger Gould, M.D.Blank
1344197_tn?1392822771
Blank
Vaginal vs. Laparoscopic Hysterecto...
Feb 19 by J. Kyle Mathews, MD, DVMBlank
Top Children's Health Answerers
803938_tn?1333809293
Blank
Ecologic
Salt Lake City, UT
1006035_tn?1391310794
Blank
skepticalpeach
MN