DOCTORS FEARED FOR JACKSON’S FUTURE AFTER HE WAS DIAGNOSED BEFORE BIRTH WITH RARE BRITTLE BONE DISEASE — BUT HIS STORY IS FAR FROM OVER

When Jackson Storey entered the world, his parents had no idea how many challenges their tiny son would face.

Born in Wichita, Kansas, Jackson was diagnosed before birth with osteogenesis imperfecta (OI), a rare genetic condition that causes bones to be unusually fragile. By the time he arrived, doctors already knew his first moments would be uncertain.

His mother, Abby Storey, said doctors could not be sure whether her baby would survive.

“I remember feeling like whether he lived or not, we had to be at peace,” Abby recalled. “If he needed comfort, that’s what we were going to give him. If he needed to fight, then we were going to fight with him.”

Jackson’s diagnosis was confirmed at 28 weeks of pregnancy. He was delivered by C-section on March 17, weighing 6 pounds, 12 ounces.

Immediately after birth, doctors took him away to provide specialized care before transferring him to the NICU. His father stayed close to the medical team while Abby waited anxiously for news.

Because of the fragility associated with OI, Jackson experienced numerous fractures involving his arms, legs and ribs around the time of his birth and while being handled.

For his mother, even the simplest moments required extraordinary care.

Abby was finally able to hold her son one week after he was born. Every movement had to be gentle and carefully supported, turning an ordinary act like picking up a baby into something that required patience and precision.

After eight weeks in the hospital, Jackson was finally strong enough to go home.

Despite everything he has experienced so early in life, his mother describes him as a remarkably calm and sweet little boy.

“He really doesn’t cry very often unless he has a fracture,” Abby said. “You have to pick him up a certain way, very flat and broad.”

Even more remarkable, Jackson seems to understand exactly how his body needs to be positioned.

“He will lift his shoulders so you can get underneath him,” his mother explained. “It’s wild how smart he is. You can see it in his eyes.”

Now home with his family, Jackson is beginning to experience the simple joys of childhood — especially time with his three-year-old big sister, Brooklyn.

Their bond has given Abby another reason to look beyond the difficult months behind them and toward the future.

Jackson’s journey is far from over, and living with OI means his family must continue taking special precautions to protect his delicate bones. But the little boy who once left doctors uncertain about his future is now home, surrounded by love, curiosity and the gentle affection of his big sister.

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