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Name: Tonya
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Name: kartik jigyasi | Date: Dec 6th, 2010 10:22 AM
hi 

Name: ayman | Date: Jul 18th, 2011 4:13 AM
السلام عليكم 

Name: Katy | Date: Aug 20th, 2011 12:26 PM
i feel for you and i wish i could help you more, but i do know how you feel my little boy is 11 months old he was born at 33 weeks before he was born we were told he had only 1 kidney as well as a coarctation of the aorta, but when he arrived they also found he was small for 33 weeks at just 3lb and also had intestinal marotation, an under active thyroid and nystagmas add developmental delay to it all and you feel like its never ending, i know its not much help to hear all this but know you are not the only one, the drs have no idea what is wrong with my little one they know his chromosomes are 'normal' so they say its most likely and very very rare genetic disorder they say they may never know. i really hope you get the answers you are looking for ` 

Name: Camille | Date: Sep 8th, 2011 11:43 PM
My son had a lot of those symptoms. He was diagnosed last November with a duplicated chromosome. There are many different chromosomes that can be duplicated, but the one that my son has, no one else has. At least no reported history of anyone. It was very frustrating to not have a name put to the problem. Especially when there's nothing to do for him other than what we are already doing. I feel your pain when you say they don't know what's wrong. They didn't figure out what was wrong with my son until he was almost 5 years old. Let me know if you have any other questions or need someone to talk to. 

Name: recina | Date: Sep 9th, 2011 2:37 AM
is your child having seizures too? 

Name: christie | Date: Oct 10th, 2011 2:06 PM
my daughter has simular problems , she is 2 and a half and doesnt speak she has developmental delay which puts her on par with a 1 year old she asperates and is tube fed and was born with a cleft pallet. she is un diagnosed she used to be sick a lot but tests showed it wasnt reflux. but she is so happy she makes me smile all the time even though she is a worry to both of us, i hope this helps 


Name: Brian | Date: Nov 1st, 2011 2:50 PM
Tonya:
My son does not have the same symptoms but he too has a rare genetic disorder that the docs have no idea what is going on. He is a twin, his sister has no issues, but he has had issues since birth. I will do my best to summarize but please bear with me. He was in the NICU for three weeks and hour to hour the first week. He was in infant and toddlers. He has always had developmental delays, has microcephaly, wears AFOs and is wheelchair bound. He was able to walk and write ok until about July 2009 at which time he had some sort of virus and went completely downhill. he lost all ability to do anything for himself. couldnt hold himself up, feed himself, get himself dressed to his abilities, walk, etc. you name it, he lost it. docs never found out what it was. one thing we do know for certain is he has a dopamine deficiency and neuro transmitter disease. but because it is genetic they have not been able to find out a specific cause or even diagnosis. last sept/oct 2010 he started using a walker and then completely went in to a wheelchair since then. his gross motor skills have regressed since then and because of all the meds he is on now he is somewhat stable. i would certainly be very willing and open to "talking" to you in depth about my son and your daugher. even though their symptoms may not be the same, i know i could certainly use someone to talk to and share my frustrations, fears and everything else with outside of my family. so feel free to contact me anytime at [email protected] if you wish. 

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