Overland Park student rides 150 miles to raise awareness for rare disorder

    OVERLAND PARK, Kansas (KMBC) -- A 17-year-old Overland Park high school student is nearing the completion of an extraordinary bike ride to raise research funds and awareness for his exceptionally rare metabolic disorder.

Carson Hunt is legally blind and has minimal vision. He was born with homocystinuria cblG (HCU), one of only 51 known cases worldwide for this strain.

This condition leaves him constantly vulnerable to vision loss, strokes, heart attacks, and seizures.

Born in Missouri, a state without a newborn screening test for HCU, it took doctors three months after Carson’s birth to identify his condition. They offered his parents a bleak outlook.

“You probably should just take him home and love him because we don’t know what to do, we don’t know how to treat it, and we’ve never seen anything like this before,” said Dana Hunt, Carson’s mother, who advocates for newborn screening for HCU in every state.

“I’m at an age where doctors didn’t expect me to be alive at this point, and I’m running out of methods. Now we’re just trying to find new ways for me to take my medicine,” Carson said.

As a baby, doctors warned Carson’s parents that if he survived, he would likely never walk, talk, or have any vision.

Despite having burned-out retinas, Carson has maintained minimal peripheral vision, which hasn’t deteriorated in a decade. However, with HCU, he remains at constant risk for additional vision loss, strokes, seizures, and heart attacks.

But this hasn’t stopped him from being active his whole life. With the encouragement of his older brother Ethan, Carson has played soccer and basketball, skied, earned a black belt in taekwondo, and can ride a bike. He also currently plays the saxophone in Blue Valley Northwest High School’s Howlin’ Husky Marching Band.

No one other than Carson has lived this long and this well with his condition. His constantly changing drug regimen is setting a prototype for managing the disorder. It has already helped 4-year-old Grayson Parke from Colorado, who shares the same strain of HCU, but so far, Grayson has suffered no side effects.

“It just feels so good being me; it can help others,” Carson said.

“It’s pretty incredible, and I think Carson represents our program with passion, purpose, and pride—our three ideals here at the high school,” said Kenneth Tysick, Blue Valley Northwest High School band director. “It is amazing that he has these obstacles in his life yet is able to overcome them and participate like any other student in the marching band.”

“I believe God has a plan for everyone. I don’t know how long I’ll live, but I just want to experience life to the fullest,” Carson said.

Carson has set a goal of riding his bike 150 miles in September to raise research funds and awareness for HCU.

“We have made it our mission to keep fighting to find a solution and to help unravel this medical mystery,” Dana Hunt said.

Carson plans to complete his 150-mile bike ride at The Kingdom Bar & Grille, located at 12655 Antioch Road in Overland Park, at 1 p.m. Sunday, with family, friends, and the community cheering him on at the finish line.

“It means a lot to see all these people supporting a local kid trying to achieve a goal of raising $20,000,” Carson said.

The restaurant’s owner is also planning to donate half of the proceeds from customers between 10 a.m. and 2:30 p.m. Sunday to help Carson reach his fundraising goal.

Carson, a junior at Blue Valley Northwest High School, already plans to attend the University of Kansas, play in the school’s marching band, and major in marketing.