By NICOLE PELLETIERE, ABC News
(NEW YORK) — An infant who was born with brittle bone disease has beaten the odds, and now his mom is sharing his journey with the world.
Jackson Storey was born with osteogenesis imperfecta (OI) in Wichita, Kansas. At first, doctors didn’t know if Jackson would survive, mother Abby Storey told ABC News’ Good Morning America.
“I just remember feeling like whether he lived or not, we had to be at peace,” Storey said. “If he needed comfort when he came out, that’s what we were going to give him. If he needed to fight, then we were going to fight with him.”
Jackson’s official OI diagnosis came at 28 weeks in utero. The genetic disease causes fragility in the bones.
Jackson arrived via C-section on March 17 at 6 pounds, 12 ounces.
“They immediately took him and worked on him,” Storey said. “He was stable and they were taking him to the NICU, so my husband went with them and stayed in contact with me.”
Storey held her son one week after he was born. Jackson had countless fractures in his arms, legs and ribs from the birth and handling.
After eight weeks, Jackson went home.
“He really doesn’t cry very often unless he has a fracture — even with that, his demeanor is calm and sweet,” Storey said. “He knows how to move his body for you. You have to pick him up a certain way, very flat, broad … he will lift his shoulders so you can get underneath him. It’s wild how smart he is. You can see it in his eyes.”
Storey said Jackson has been enjoying life with big sister Brooklyn, 3.
Now, Storey shares Jackson’s journey on her Instagram page and blog, And So the Storey Begins.
“There’s a lack of representation in that world. Disability is a wide spectrum, but specifically for OI,” Storey said.
Storey said she’s been connecting with others who have OI, and parents of children who have OI. Her goal is to raise awareness, she said.
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