A rare life... Mitch Jones shares the story of living life with a rare disorder

Mark and Barb Jones tried for three years before they finally heard the news they had been waiting for - they were expecting a little bundle of joy. However, their joy turned to worry when their little baby arrived six weeks early, born in July of 1987. Only a half hour after his arrival, Mitchell, was diagnosed with a rare respiratory disease. He needed to be Life Flighted to Blank Children’s Hospital in Des Moines immediately. Mark and Barb were told “If you’re religious, I recommend an emergency baptism.”

“I remember how Mark and I each placed one of our fingers on Mitchell’s feet while he was being baptized,” recalled his mom.

Shortly after, Mitch was whisked off to Des Moines. Barb was not allowed to go so soon after childbirth, so Mark was left to go on his own to drive to the hospital where they were taking his son. When Mark entered the NICU of Blank Children’s Hospital, all he heard was the sound of beepers going off in his son’s room. The doctors worked on Mitch for an hour-and-a-half before Mark finally got an update.

“The Dr. told him, ‘if your baby survives the night, he will probably make it,’” said Barb of the horrifying experience. Mitch did survive, and he spent the next two weeks on a ventilator as he was diagnosed with Respiratory Distress Syndrome.

“His body was born without an enzyme that keeps the air sacks inside his lungs inflated,” explained Barb. “...It’s the same syndrome that killed John F. Kennedy’s son.”

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