Ok so here are the things thay are medically going on broken down with each of the boys. Dominic- 22Q11 deletion...part of the 22 chromosome is missing. Born with an interrupted aortic arch (repaired at birth) ASd, VSD Stenosis of the aorta. Will need future surgeries as he gets older No thymus glad, no immune system of his own which he receives immunoglobulin transfusions for and takes a profolactic antibiotic for. He has mild aspiration, reflux, failure to thrive and speech delays/learning disabilities Brady- has 22q11 deletion born with craniosystenosis, short .pallet, anemia, weak immune system, speech delay, learning disabilities, migraines, now testing for mood disorders and ADHD he has a restless body dosorder. Anthony- born with 2 different disorders 22q11 deletion and fatty acid oxidation defect disorder. So FAODD basicslly means he need to take 3 different meds for the rest of his life to prevent fats hardening in his liver (which could be life threatening) and he is on a strict diet. How 22q effects him-he has a low immune system, trouble regulating calcium, learning disabilities, speech delay and we are starting to see the behavior issues We have been trying to figure this all out in the last for years. It is financially very hard on us. We have set up a gofund me account. It has become even harder since Brady has been put on meds that our Insurance currently isnt covering. We really could use any help that is offered. If you want more info why we set up this account please inbox us.
Posted on: Sun, 24 Nov 2013 04:19:43 +0000
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