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.

As a little boy, Liam seemed to feel sick very frequently – far more than his two older brothers.  He’d have a harder time recovering from illness, being sluggish, tired and missing many days from school. Mary, Liam’s mother’s concern started to grow as the pediatrician visits got more and more frequent. For years, she was told the same things – it’s probably allergies, or just a viral infection. But those answers weren’t good enough for Mary. She took him to gastroenterologists, immunologists, requested blood work and more, searching for answers. It would take nearly a decade to finally get an answer, when Liam was 14.