MINNEAPOLIS - His great grandmother and mother were carriers. His grandfather had some symptoms.

But a toddler is the first in his family to bare the brunt of a rare genetic mutation called Ipex. Doctors in Chicago figured out what was wrong with the boy, but it was a vacation to Minnesota that made the difference. Trish Van Pilsum has followed the boy's progress for the past five months and has his powerful story.

You can count on one hand the number of kids who have survived what little Brent Groza has.

What you can't measure is the sheer force of a parent’s love and the difference that can make. A parent like Melissa who told her son, “I'm not done yet. I'm not done being your mama yet.” Right then and there she made him a deal. “Fight on”, she said, “We made a promise to him that we would make life worthwhile for him.”

That is a big claim to make to a kid with a disease so unusual.

It’s called Ipex; a genetic disorder that gave him a super active immune system. It was so aggressive it sees his organs as intruders. It attacks his pancreas which explains the diabetes. It attacks his stomach which explains the diarrhea. Left alone his immune system would eventually kill him. They gave him maybe 19 months.

Melissa says, “I did the math really quick and I thought he can't grow up, he can't learn to drive a car. He can't have his first crush, his first heart break, he can't ride a bike. In 19 months he can't go to college. He can't do those things and I looked the doctor and I said no, fix him.”

The only possible fix: a bone marrow transplant. It was done at the University of Minnesota Amplatz Children’s Hospital.

His doctor was K. Scott Baker who has high hopes for Brent. He says, “He's incredibly strong and resilient.”

If you'd like information about becoming a bone marrow donor look for our link to a national donor registry.

National Marrow Donor Program
http://www.marrow.org/JOIN/index.html

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