Quinn Avis is lucky to be alive. This little fighter has two of the rarest diseases on Earth — ones that normally claim the lives of children younger than him. But Quinn was lucky to just be here in the first place. Doctors said those two disease were so horrific that Quinn’s parents should consider aborting him.
Quinn is the oldest known person alive to have two rare disorders called Prune belly syndrome and Berdon Syndrome, or Megacystis Microcolon Intestinal Hypoperistalsis (MMIHS).
He’s never eaten food, and relies on tubes for nutrients and digestion.
Prune belly syndrome is a birth defect that occurs in one in about 40,000 babies, the vast majority of which are boys. Babies with prune belly have poorly developed abdominal muscles and problems with their digestive system. Many are stillborn or die within a few weeks of birth.
MMIHS is a congenital disease so rare there are only a few hundred known cases in the world. It’s closely related to prune belly syndrome, causing malformations of the urinary tract, a microcolon and malrotation of the intestines.
Quinn’s health is fragile—he’s at constant risk of infection—and it takes hours of diligent care each day to keep him healthy.
That sounds like a perfect situation for an abortion, right? Not according to his parents, including his mom Kathy MacKercher. Why would parents want to take the life of their own child instead of giving him a chance at life, she surmised. Not only did they refuse the abortion, they had physicians help Quinn with an in utero surgery to give him a boost before he was ever born.
While physicians offered to abort, Avis and MacKercher decided to give their son a chance at life.
“There’s no reason to not even give him a chance,” Avis said.
When Quinn was born at 36 weeks, physicians had already done in utero procedures to empty is bladder.
Just because they gave him a shot at life doesn’t mean Qiunn is having an easy time. The road has been long and difficult and Quinn needs constant medical care and attention:
One of Quinn’s biggest challenges came when he was 2 years old.
He was in Mott for 70 days because of sepsis following impaction in one of his tubes. His abdomen was cut open for three weeks for physicians to flush out the infection.
That showed his strength, his mother said, as he was several major drugs such as morphone and methadone.
The family is relying on their faith and God and help from family and friends.
The support for the family has been incredible, from the nurse who bought a candle at a craft show for MacKercher on her day off to MacKercher’s colleague at Skyline High School Jeff Bradley, whose students helped set up a fundraiser for Quinn in the fall.
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Over time, MacKercher and Avis learned to ask for help. Family and friends often want to help, but may not know how, MacKercher said.
The family also relies on their faith in God, and they make sure celebrate the good times.
And they’ve learned a great deal from Quinn, whose life experiences have given him wisdom beyond his years.
At just the right time, he’d tell his parents to hug.
“We needed that,” MacKercher said.
When you hug your own children today, think about Quinn and send a prayer his way.