Born With Dwarfism, Living with Pride

Jenn Keeton was a longtime Children’s nurse, surrounded by common and rare diseases among the youth. She never thought her own child would be born with one.

Her and her husband Kevin struggled for a while to have kids, but then turned toward fertility treatment with Children benefits programs. They took on in vitro fertilization (IVF) and after three rounds of it, Jenn finally got pregnant with their son Wyatt.

It was a relief to finally be pregnant, a relief soon shattered when Jenn’s ultra sound revealed that Wyatt was behind on his bone developmental process. After a genetic test, it was determined that Wyatt suffered from a rare but non lethal form of dwarfism called Spondyloepiphyseal Dysplasia (SED). To learn more about this form of dwarfism, click here.

But it didn’t end there.

When he was 11 weeks old, Wyatt was diagnosed with spinal cord stenosis. As a result, his head is disappropriate to the rest of his body which causes pressure on the spinal cord. In order to avoid the difficult surgery for this, they would have to put Wyatt in a special cervical collar designed for spinal cord stenosis. Alas, no collar was small enough to fit his head.

They decided to put matters into their own hands by getting scrappy. They made their own collars by cutting a strip off an adult brace. According to Children’s Healthcare of Atlanta,

“Wyatt’s spinal stenosis is almost completely resolved, so he won’t have to undergo surgery,” Jenn says. “He’ll wear the brace for the foreseeable future until this is resolved. I buy fabric for the collars—all kinds of colors and themes. He must have at least 30 by now. We have fun with them.”

Though Wyatt is very behind from a developmental standpoint, he has met some critical milestones in his life, considering his age and his condition, all in part due to physicals and speech therapy.

From a healthcare standpoint, Wyatt is getting everything he needs with the best care that exists. Because Jenn already had a long career in child care, her friends and connections have been beneficial for Wyatt.

The Keetons are very thankful for Children’s and all of the help they’ve been given this difficult journey. Despite the rare disorder, they are happy enough even having a son, something they struggled with having. Wyatt will always be their lucky blessing.

To help Wyatt and other kids like him at Children’s, click here.

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