Doctors Give Child With Rare Condition Chance At A Normal Life
Few patients greet their doctors with as much enthusiasm as 8-year-old Maddie Sharpe because few patients have seen their doctors as much.
Posted — Updated"Every time she would cough her trachea would collapse," Dr. Ben Corbett tells KCNC-TV's Stan Bush.
She was born with a rare condition called tracheoesophageal fistula. Her esophagus and stomach were not connected. For years after her first surgery to fix the connection just taking deep breaths was a challenge.
"As a mother, I wanted to put her in a bubble and protect her from this world," says Kim Sharpe, Maddie's mother.
Maddie's condition forced her to sleep with a ventilator. He suffered from frequent bouts of pneumonia and needed powerful doses of steroids and antibiotics. Every few weeks her family would have to make a 540 mile round trip from Casper, Wyoming to the Aerodigestive Program at Children's Hospital Colorado's Highland Ranch facility for care that included more than a dozen surgeries.
But all of that changed when specialists gave her a tracheopexy last summer that attached her trachea to her spine to keep her airway open. The procedure was only the second one performed at Children's and if it had failed Maddie would likely be hospitalized multiple times a year with breathing problems.
"At such a young age we would foresee this happening for the rest of her life but she's not on that," says Corbett.
This winter she skied for the first time and participated in the Special Olympics. Her parents believe she has a chance now to live a normal life.
"She's going to be ok. She can go downhill and be fast and I can't stop it. I can't put her in a bubble. She can fall and it's going to be ok," says her mother.
Her doctors may not see much more of her. They believe she is close to a goal where there are no upcoming appointments on the calendar after years of seeing doctors every few weeks.
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