Mother and son: medical "zebras"

LAWTON, Okla._A local mother and her son suffer from rare genetic disorder called Ehlers Danlos Syndrome, or EDS.

It is a group of genetic disorders that most commonly affects connective tissues which causes problems with the skin, joints and blood vessels. In worst cases, it can cause organs to rupture.

There are only about 20,000 cases diagnosed per year, and no two cases are identical, making it very hard for doctors to treat.

On the outside, Alexis Hanson and her two-year-old son Payton look completely healthy, but they each battle different symptoms of EDS.

For Alexis knee pain is her biggest issue, which she alleviates by walking with arm crutches and wearing knee braces.

"For my son he has daily bleeds, he has nose bleeds, his head bleeds, he, is on about 7 different medications, 2 for clotting," Hanson said.

Payton has had an ulcer on top of his head for the past year and a half that despite multiple surgeries, hasn't healed.

"Just because his skin doesn't want to hold together once they take the staples out, it wants to open back up and bleed constantly, his nose bleeds and he's become anemic from it," she said.

There is no cure for EDS, Alexis said it's just about treating the symptoms as the come.

"You do physical therapy, you see a cardiologist and I do pain therapy."

She said the hardest part is knowing exactly how much pain her son is in at times.

"He has pain when it bleeds, he can tell you before it bleeds probably from pressure build up which causes it to bleed, and when his knees are hurting and he just wants to lay there and be held, that's probably the worst because you can't do anything for it."

But she said Payton is quite the little warrior.

"He gets his blood drawn constantly, and he gets poked and doctors' appointments, he's even learned to loved getting his weight done, he wants to know how fat he is; that's what he says."

Because the disease is so rare, most doctors aren't aware of the disorder.

"I've had a doctor Google it when we walked in."

So, the EDS community refers to themselves as "zebras."

"[Doctors] are not trained to look for a zebra. That's rare, that's not something you're going to see in a herd of horses."

Alexis said she just wants people in the community to know about EDS, and others who share the syndrome to know they aren't alone.

Because EDS is a genetic disorder there is a fifty-percent chance their youngest son will have it, but Alexis said he hasn't shown any symptoms of the disorder.

Payton is in need of a full genome work up that will better guide doctors in his treatment regime. The Hanson's have a GoFundMe set up to help pay for those expenses. Their page can be found here.