…that Brock had a right clubfoot. We were informed when Brock was about a month old that he had a rare genetic disorder called XXXXY Syndrome. He has 49 chromosomes. The pediatric cardiologist/geneticist that gave us the results also found that he had a heart murmur. The echocardiogram showed a small shunt at the atrial level measuring 4 mm in diameter, which is a patent foramen ovale and has hypotonia. When he was about 3 one of his doctor’s mentioned that he had limited supination and pronation at his elbows. Later after consulting with his doctor at ahrine Hospital an x-ray confirmed that he was born with bone fusion in neutral position just below the elbows on both arms.Milestones did happen they just didn’t happen in the “normal” time frame. But Brock did them sooner than any doctor had expected! Brock was able to communicate with us since he was 18 months old through sign language. He began speaking a few words when he was about 3 years old. It was such an experience to learn sign language together. He took his first steps right around his 2nd birthday.
As his mother, I researched and reached out to other families. Brock has been part of a research project that was taking place by a doctor researching 49 XXXXY syndrome in Denver, CO. He has gone twice to Baltimore, MD to see a doctor that specializes in XXXXY syndrome and has gone through some intense evaluations. He has multiple local specialty doctors that he sees, but none of them have dealt with XXXXY Syndrome, which made reaching out to other families from around the world a lifeline to finding out what we needed to do and what we needed to look into.
He has had countless surgeries, many of which have been performed at Shriners Hospital, and many hospital stays due to his low immune system. When looking at bone x-rays, we need to leave any conclusions on what the x-rays show with his doctor at Shriners. Since his bones grow at different rates, some bones are fused, other bones have had to be cut and rotated and muscles have had to be tightened; it makes it difficult for other doctors including radiologist to read what is going on with Brock’s anatomy. He comes out of it all like a champ.
Brock will be 15 in August and has a love for the outdoors. He enjoys archery, deer hunting, turkey hunting, fishing, riding four wheeler, and swimming. Even with a surgery in October of 2016 that put him in a full leg cast, he still wanted to go to target shooting. He found ways to be able to still make archery work for him. He has a very caring heart and enjoys telling stories.
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