The Serban Family (Foundation Director, Katie Chiet)
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We learned that "something was not right" with our firstborn at about 32 weeks gestation, but it wasn't until he was here in our arms that we could start forming the picture. Chase was born full term (and at a healthy 7lbs 15oz!) but went to the NICU after delivery for respiratory distress. After 10 days and 10 specialists, we were sent home with our sweet baby boy, an apnea monitor, and instructions for follow-ups.
A nurse heard a murmur and the cardiologist said he had a large VSD. His left foot looked a little off, and we did weeks and weeks of serial casting for metatarsus adductus. He wasn't able to produce sound at more than a whisper; the ENT diagnosed a laryngeal web. At about 7 weeks, someone suggested to us that all of Chase's little things could be attributed to a genetic syndrome so i Googled "VSD and laryngeal web" and found 22q11.2 deletion syndrome. We quietly kept a checklist and when the VSD was diagnosed as Tetralogy of Fallot during open heart surgery, John and i knew that was our answer. It was 7 more months, the week before Chase turned 1, that the diagnosis became official.
We aren't people who stay still very long (we're both physical therapists and long distance runners), so once we got our bearings, we knew we needed to get involved. I had run for a charity team before and decided to learn how to form a team myself. The #werun22q team for the Ragnar Washington DC was my first experience with fundraising and captaining a team, and with it brought life-changing friendships and partnerships! When we found out that the Dempster Family Foundation was closing, i reached out to the Garcia family, knowing they were people who could get things done, too!
It is my great wish that the 22q Family Foundation provides exactly what I was looking for when we got Chase's diagnosis - hope, education, and friendship from others in our community.