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SALT LAKE CITY — A rare genetic disorder steals some of the breath from Rhett Carbine’s lungs every day. A personalized wheelchair that carried his oxygen tanks gave him freedom until that was stolen, too.
He and his family are eager to get that wheelchair and freedom back.
“I need a chair for long distances,” said 19-year-old Rhett Carbine.
He breathes through a tube hooked up to an oxygen concentrator while he’s at home.
Rhett has short rib polydactyly syndrome (SRPS) type 2, or Majewski syndrome. It’s a genetic disorder that stopped the growth of his ribs and lungs at age 10. It’s a lethal, skeletal dysplasia. Doctors told his mother, Andrea Carbine, he wouldn’t likely survive infancy.
“There was no chest for lungs to develop and grow,” said Andrea Carbine. “His heart was normal size. They told me he was going to die.”
Several months ago he was given a portable, electric wheelchair that carries four oxygen bottles in a rack on the back of the chair. His mother could lift in and out of her SUV.
“It helps me get around easier,” said Rhett Carbine. “My stamina level is all the way down here (reaching for the ground). “The chair’s stamina level is all the way up here (reaching for the ceiling).”
Two weeks ago in the middle of the night, a thief swiped the personalized wheelchair out of his mother’s SUV parked in front of their home in the Avenues.
Rhett Carbine’s reaction?
“Shock and confusion,” he said. “Why would someone do this?”
For the last 14 months, Rhett Carbine has been serving a mission for The Church of Jesus Christ of Latter-day Saints. He does that service two days a week at home, where he can breathe from the oxygen concentrator. On the other three weekdays, he needs the wheelchair to carry the oxygen tanks so that he can serve downtown.
“The wheelchair gave him freedom,” Andrea Carbine said.
That’s critical for a young man eager for independence.
“To have that taken from him was heartbreaking,” she said.
Rhett has been making do with a wheelchair on load from Shriners Hospital until the family can raise enough money to buy another one. Friends have set up a GoFundMe account*.
“It’s been a huge blessing,” said his mother.
*KSL.com does not assure that the money deposited to the account will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the account, you should consult your own advisors and otherwise proceed at your own risk.
