OLIVIA
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We found out about Olivia’s deletion through amniocentesis. She is one of the cases that is not hereditary, it was just a genetic anomaly. So far the main issues associated with her deletion are TOF with APVS. Olivia had her repair at 2 weeks old, on Valentines day of this year, but will still need surgeries as her replacement valves start to deteriorate. Her repair included patching of a VSD and a second small hole, a temp valave made of bovine tissue, and cinching down of 2 of her arteries. During her recovery she gave us a scare, she crashed, but they got her back and she did amazing after that. Everyday is a blessing with her, she recently discovered she has hands and that they apparently are very tasty.
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Reebok Ragnar Chicago - Annual 22q Family Meet-Up and Fundraiser
#WeRun22q is a team of runners dedicated to raising awareness for 22q11.2 deletion syndrome. They are dedicated also to raising funds for our foundation and keeping our educational programs free of charge to families. Last year, they ran through...