Health Team

Hunter's Hope Foundation helping families at Duke

In 1997, former Buffalo Bills quarterback Jim Kelly's son, Hunter, died from Krabbe Leukodystrophy, an inherited fatal nervous system disease.

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DURHAM, N.C. — In 1997, former Buffalo Bills quarterback Jim Kelly's son, Hunter, died from Krabbe Leukodystrophy, an inherited, fatal nervous system disease.

The foundation formed by the NFL star, called "Hunter's Hope," is helping families who come to one of the few places where they can find hope, at Duke University Medical Center.

Jamieson Howard, 4, was born in Missouri with a fatal blood disorder that his parents didn't even know about until he was 6 weeks old.

“He developed a viral infection and had a pretty high fever, and from that, he started having rapid eye movements,” said Dawn Howard, Jamieson’s mother.

PMD is part of a group of disorders called leukodystrophy where the blood lacks an enzyme needed to cover the brain's nerves with a protective covering called myelin.

“And without that, the brain degenerates and eventually will die without treatment,” said Dr. Joanne Kurtzberg with the Duke Pediatric Transplant Program.

Duke's pediatric bone marrow transplant program is the source of hope for children like Jamieson who come from across the country. His parents had to stay near Duke for more than a year while their son received chemotherapy, a cord blood stem cell transplant and follow-up treatments.

They said they worried about the costs of paying for a place to stay.

“It's a burden that you shouldn't have to deal with when you are trying to take care of your child,” Howard said.

Kelly Brown, who lost her son David in 1997 to a similar disorder, Krabbe Disease, directs the family support program for Hunter's Hope. They have three furnished apartments in Durham for those families.

“And they (Jamieson's family) did stay in one of ours, the second one that we had, for a year, rent free,” Brown said.

Jamieson received his transplant a little more than three years ago.

“His disease was corrected and we're hopeful that he'll make gains and learn new skills which he's doing now,” Kurtzberg said.

Jamieson is learning new words. Though he may never walk or talk normally, his parents said they are thankful he's taking steps for a better quality of life.

The earlier leukodystrophy disorders are caught and treated, the better chance the child has for surviving and developing more normally. Hunter's Hope is holding a walk for Universal Newborn Screening on Oct. 31.