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'I had to help': Coopersville family with rare dwarfism gets creative to fix painful limb-lengthening recovery

The process grew Joe Van Den Brink's legs by 10.5 inches, and his arms by over four inches.

COOPERSVILLE, Mich. — A Coopersville family is sharing their incredible journey with a rare form of dwarfism. After their son suffered severe pain following a leg-lengthening surgery, his dad used his experience and knowledge to help.

The Van Den Brink family hasn't let their diagnoses or any complications stop them from staying positive.

"I think that all that I've been through in my life has kind of led me up to this," said Joe Van Den Brink, who was born with a rare form of dwarfism called Multiple epiphyseal dysplasia.

"I am not a dwarf," he said, "I am a person with dwarfism."

The diagnosis was extremely challenging, and as a child, Joe underwent limb-lengthening surgeries for years.

The process grew his legs by 10.5 inches, and his arms by over four inches. 

But that process was not easy, or comfortable.

"There's a lot of blood vessels, tendons and muscles that have to get lengthened as well," Joe said.

He added that the technology for limb-lengthening has come a long way since he was young. This is something Joe said he is thankful for, since his two sons were born with the same rare diagnosis.

"Obviously I didn't want them to have it, but I think it makes them stronger in the long run," Joe said. "It made me stronger, for sure."

Joe and his wife, Julie, knew it wouldn't be easy for their sons, but they thought that getting their limbs lengthened was what was best for them.

"We felt that it was in their best interest to do limb-lengthening," said Julie Van Den Brink, "but we absolutely respect that it's not for everyone."

Joe's oldest son, Travis, went through limb-lengthening surgery with one round on his arms and one on his legs when he was 11 years old. 

Tyler, their younger son, had his first round of leg-lengthening at just 9 years old. But it was not the experience they expected.

"I knew it was going to be tough," Julie said, "but I didn't know it was going to be as tough as it was."

Tyler's recovery was extremely painful. Julie and Joe said he didn't sleep well and pain medication wasn't working.

That's when Joe used his background as an electronics technician to make changes to the recovery and healing process. 

"Once I learned that I might be able to prevent this for him on the next round of surgeries, and potentially for other patients, I knew I had to do something," Joe said.

Joe and his long-time friend, Ben Moes started a company called MoeJoe Engineering.

"Joe has a tremendous amount of personal experience," Moes said, "and we thought that our skills and our background could really help people."

Ben and Joe reached out to NuVasive about their ideas, which is a company that handles the technology involved in limb-lengthening. Just months later, their small business was hired to collaborate with the major company.  

"The opportunity to work with my best friend on a technology that was so personally important to his family was unbelievable," said Ben Moes. "It was an answer to a prayer and an amazing opportunity that we'll remember for the rest of our lives."

Tyler Van Den Brink will undergo another leg-lengthening surgery in the spring, and Joe is proud that now his experience can be much easier. 

"I'm glad that something very positive could come out of something that wasn't so great." Joe said.

Joe and his business couldn't give too many details about their collaboration with the fusion technology company as they still work through finalizations.

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