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Meet John, an 8 year old fighting a rare genetic disease with the help of PBRC

John has dealt with a cleft palate, hip surgery, speech and physical therapy and more.

ODESSA, Texas — You won’t meet anyone quite like John Alexander.

He never shies away from a challenge, he’s funny, and more importantly this kid has heart.

He is quite possibly the world’s most interesting young man.

At 8 years old, John has been through a lot. The Permian Basin Rehab Center has been there every step of the way.

"After John was born we found out he had a cleft palate. We first started coming here for feeding therapy since there was nothing between his nose and his mouth," said Kristen Alexander, John's mom.

Then he returned for speech therapy a few years later.

Today he’s back at the rehab center for physical therapy. He’s getting treatment for something his family initially thought was growing pains.

“He started complaining about leg pain. His left leg. He started having a lot of pain in his left leg,” Kristen said.

A few trips to the doctor proved it wasn’t growing pains.

“John has what’s called Legg-Calve-Perthes disease. That’s a fancy way of saying the ball of his femur lost blood flow, so it started breaking down in his hip joint,” said Kristen.

The rare disease forced him into a wheelchair and an eventual surgery to repair his hip.

“They cut inside there and then they screwed all the way into my femur,” John said. “They replaced it with this metal bar and some screws. “

The condition brought John right back to the rehab center with the goal of getting him back on his feet.

“We’re really strengthening the left side and stretching the right side. The right side is the side that he’s put weight on this whole time and those muscles are used to working within a unilateral or one side of his body – that’s what has overtaken everything,” said Kristyn Rogers, assistant physical therapist with PBRC.

With every stretch and exercise, John not only performs- he also understands.

 “He likes to know why we’re doing everything. He likes to be in the know of what muscles we’re working, why we’re doing it, what it’s going to build up to be later.,” Rogers said.

While regaining his balance and strength, one thought kept coming to the front of his mom’s mind.

“There’s gotta be something that is a reason that all of this stuff is happening,” Kristen said.

Turns out mom was right.

John has what is called Stickler’s Syndrome. It’s a very rare gene mutation that’s even harder to diagnose.

“The Stickler’s Syndrome caused him to have the cleft pallet, he’s really near sighted, so it caused him to have the really near-sightedness. It caused the Legg-Calve-Perthes disease,” Kristen said.

They were able to get confirmation through a genetic test last summer.

“It was like a weight lifted because it was finally an answer,” Kristen said.

The ultimate understanding.

“If I didn’t have the genetic testing, I would just be wondering all my life, why is this happening to me?” John said.

Now that he knows, all of John’s attention is focused on getting better.

“He is always willing to go the extra mile. If I say we’re going to do 10-15, he’ll say which one? Do you want 10 or do you want 15? I’ll do 20 instead,” Rogers said.

A young man determined to reach every goal set before him.

“No more walker. No more wheelchair. He still can’t run and jump but he is finally free of everything he needed to get around before,” Kristen said.

He is proof that no matter what life throws at you, the question is never ‘why me?’ but rather ’what’s next?’

“He’ll tell you all of the things he’s overcome so far. And he’s like ok, what’s next? What are you going to throw at me this time?” Rogers said.

It’s pretty simple, and funny to learn that from an 8-year-old. But that’s just John-the world’s most interesting young man.

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