Chromosome1q21.1 deletion anyone heard of it

I share in your frustration. I have a now four year old who was born early. 5 weeks she was 8'2 and 17 in she came out very dark perhaps stayed in canal too long but was no other signs of any problems. I breastfed but got sick a bit so she had to be on bottle she became violently ill projectile vomiting the Doctors admitted her and tests were done so many test nothing came back why this was happening trying all types of milks even soy nutramagin. Finally I was cleared to begin breastfeeding her again and she stopped. She completely recovered leaving doctors baffled until about 6 months old I noticed she was not developing normal. I startedbaby food and projectile vomitting came back with a vengeance  She was diagnose as failure to thrive  became so ill she spent more time inpainent at Duke diagnosed with this and that then told no that is why sent home overage over with no answers Doctors said they didn't know but keep doing what I was doing. One time there an it saw her and wanted to do a swallow test  turned out she was inhaling food and drink and causing her to develop pneumonia. After hearing that the hematologist told us she had neutropenia which meant no immunity to fight illnesses anytime she gets a fever she must be hospitalized. So if she ate or drank it would turninto pneumonia and after using an antibiotic a body would build immunity to it and eventually be useless  on top of that the geneticist came and told us they found a genetic abnormality a small deletion Chromosome 1q21.1 however they didn't know what it was or y she had it. No information. What to expect for her future shortly after that a G tube was placed and we were told  she would not eat again and possibly  have speech delays if she would speak at allthat was March 2008