'He wants to crawl so bad'; Norfolk family shares story of baby born with rare joint condition

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Posted at 2:45 PM, Feb 25, 2020
and last updated 2020-02-26 04:19:10-05

NORFOLK, Va. - He will turn one year old this weekend, yet he can't crawl, walk or stand like most little babies his age.

"When he was born, I just instantly broke down in tears, his legs were twisted up like a pretzel," said Jordan Burton.

At 34 weeks, Jordan gave birth to a four pound baby boy she and her husband would name Ashton Cole. "Early on in the pregnancy, the doctor found club foot, I was OK with that, but still a little scared," said Burton.

The doctors gave her a pamphlet on a rare joint disorder called Arthrogryposis Multiplex Congenita which they said they couldn't do much about and sent her on her way.

"I was like OK, this is my life now, I'll just be a big advocate for him."

Fast forward and Ashton is now 11 months with big brown eyes and a glowing grin he appears full of life. "His future kinda scares me that one day he is gonna ask me why am I different," said Burton.

Ashton's legs have been in braces, casts, splints, boots and he's gone through several surgeries in the past 11 months.

"With Arthrogryposis , you have two or more contractures in area of body where joints did not form properly so they are curved or hooked," Burton explained.

Ashton's rare condition only effects one in 3000 babies. "We stretch four to five times a day, but he still can't stretch his legs out straight, he wants so badly to crawl," said Burton.

Even after weekly therapy visits he's still behind and simply doesn't have the strength to move.

"I have very high hopes he will walk even if it's with a walker," said Burton.

His parents need to get him a specialist in Florida as there are very few doctors in the U.S they treat the rare disorder.

"We found a place called the Paley Institute in Florida, Dr. Feldman there is the best who specializes in this and the kids he treats come out completely changed," said Burton.

The family will be heading to Florida April 7-May 9 to go through serial casting to gain range of motion and more physical therapy.

"The only thing I want is for him to feel normal like other kids," said Burton

The trip and stay will be expensive between medical bills and travel. Burton hopes the community will pitch in to give baby Ashton a little extra boost.

"I am trying to raise awareness for him and for Arthrogryposis, which not many people know of," said Burton.

The family has created a Go Fund me page to help Ashton on his journey to taking his first steps. Click here for more info.