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Access to expert care at CHOP saved Jahier’s life

January 21, 2023 started off like a normal day for 13-year-old Jahier and his mom, Amber. The two had just gone out to eat and did a little shopping afterwards. When they arrived home, Jahier helped carry a few bags inside when suddenly he started to cry. “It wasn’t a normal cry,” Amber recalled. “He started saying he couldn’t feel his legs and said his head was hurting.”

Amber didn’t wait. She rushed him to the local emergency room, which was just a 5-minute drive down the road. By the time they arrived, Jahier couldn’t walk. The team of doctors called for a stroke alert and conducted a brain CT. The first scan looked normal, but Jahier’s condition continued to worsen. A second scan, this time with contrast, revealed a ruptured brain AVM — and the bleed appeared to be spreading.

Jahier was airlifted to Children’s Hospital of Philadelphia (CHOP), which just so happens to be a pediatric HHT Center of Excellence. Jahier had an embolization that day and underwent a craniotomy to remove the AVM the next morning.

At some point, a genetic counsellor came in to talk with Amber – who shared that Jahier had nosebleeds his whole life. It was then that she heard the term “HHT” for the first time. “We’d go to a local ENT, but they never mentioned it. They just cauterized and it wasn’t helping. We could’ve caught this years ago.”

Today, Amber says Jahier is doing “absolutely amazing.” He has a PAVM that is being monitored, but is back to being a teenager despite the scary event. Amber considers herself incredibly lucky to have a pediatric center of excellence so close, and shared the following message with her son’s doctors at CHOP – “Thank you, thank you, thank you. You don’t understand how much I mean that. You saved not just my son’s life, but mine. It’s an amazing team. Truly amazing.”

When you donate today, you can help us certify more pediatric centers of excellence across the U.S. in the hopes of more stories ending like Jahier’s.

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