Henry was diagnosed formally in 6/2023. He was born with vertical talus in the right foot and oblique talus in the left. He had two orthopedic surgeries before he was even three months old to fix this. Our little man also needed a helmet to treat his plagiocephaly that was formed from his torticollis which in another symptom attributed to ZARD. I know something genetic was going on due multiple family members also having vertical talus and having intellectual delays. Henry has been dealing with gross and fine motor delays along with speech delays. He wasn’t able to get intensive therapies until he was about 1 year old. He’s been having PT, OT, and ST weekly. He’s such a determined, smart little man and he has progressed beautifully since we started aggressive supportive therapy about a year ago. He still has delays but is doing so well!! Now, the problem is knowing if or how this disease will progress. ZARD is so rare and extremely under studied. All we can go off of is previous case reports and even that is sparse. The only treatment we know for this disorder is supportive care. We can’t wait for the day when we can start preventive treatments before another symptom progresses and becomes more severe.
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