Kelso Boy living with extremely rare growth disorder - KPTV - FOX 12

Kelso Boy living with extremely rare growth disorder

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KELSO, WA (KPTV) -

A young boy in Kelso is living with an extremely rare growth disorder that causes his body to grow at an incredibly fast rate.

When you meet Gabriel Shefchek he's like any other 3-year-old boy. He plays with his siblings. He loves his toys and, most of all, loves his mom. Gabriel has an extremely rare condition called Weaver Syndrome.

"Milestones that are big in general with parents, are even bigger with us," Gabriel's mom Kassie Schmidt said. "He's just constantly growing."

When Gabriel's mom Kassie was pregnant with him her swollen belly measured 58 inches.

"It felt like I literally couldn't take a deep breath. I felt like the air was being sucked out of me all of the time because he was just so heavy," she said.

Doctors told her that Gabriel was just going to be a big baby. But she knew something wasn't right.

"It was maximum capacity. I don't think we could have gone a couple of days later. I would have exploded," Kassie said.

Gabe was delivered by cesarean section weighing a wopping 12 pounds, two ounces. He was so big the doctor had to break two of Kassie's ribs during the delivery.

"The whole room had fallen dead silent. And, I kept going, what's wrong with my baby, what's wrong with my baby. And, finally a nurse said, 'He's huge!'" Kassie said.

Weaver Syndrome causes the bones to grow faster. At 3-and-a-half years old, Gabriel looks like an 8-year-old. He weighs 70 pounds and is already taller than his 7-year-old sister. His shoes are almost as big as his mom's.

"There are tens of people in the United States, maybe a few hundred people worldwide with these disorders," OHSU Medical Geneticist Dr. Susan Hayflick said. "So, it's in the category of ultra-rare disease."

Doctor visits have become a part of life for this family. Gabe's condition puts him at a higher risk of cancer so he's tested often. He also has autistic tendencies and is missing important receptors in the brain that help him deal with emotion.

"The way that he's touched everybody around has just, it's something I've never seen," Gabriel's dad Justin Shefchek said.

Gabe's condition gives him vivid blue eyes. He could be over 7 feet tall when he's done growing, his family says.

Hayflick said there are likely hundreds of undiagnosed cases of Weaver Syndrome in the world. She says people with this syndrome still have the potential to live a healthy, long life.

"I think I've learned more from him in the last three years that I've learned from anybody," Justin Shefchek said.

He's a tough boy that's bigger than the rest, with a bigger heart than most.

"I don't think I could love him any more," Kassie said. "Every day I just look at him and I fall in love with him all over again."

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