Rare disease brings families to Minnesota hospital

What would you do if you knew your child was dying?

"It's frantic," says Kerry McCall, who knows all too well how that feels. "It's an absolute panic."

For McCall the best she could do was bringing her son Jack from their home in Miami to Minnesota.

Jack McCall, 8, has a rare neurological disease called ALD. It afflicts only boys -- mostly between the ages of four and ten. It's best known as the disease featured in the 1992 film 'Lorenzo's Oil.' It is often fatal.

Early symptoms of ALD often mirror those of Attention Deficit Disorder, including inability to focus and poor performance in school.

"The repetitive speech was probably the first thing we started to notice" recalls McCall.

Once a gifted student, Jack has lost both cognitive and motor skills -- as well as his peripheral vision.

His condition will continue to worsen.

"Look at him," says McCall as she glances toward her son playing nearby. "He looks normal. And he's dying."

The brain damage Jack has already suffered cannot be reversed. But his mother believes Jack's best hope of staying alive rests with Dr. Paul Orchard.

Dr. Orchard is an expert on pediatric bone marrow transplants at University of Minnesota Children's Hospital - Fairview.

Since 2000, the hospital has performed 45 such transplants to treat ALD - half the total in the entire world.

"Damaged tissue doesn't regenerate itself in the brain. The concept of the transplant is to arrest the progression of the disease," explains Dr. Orchard.

Kerry McCall and Jack are now staying at the home of relatives in Golden Valley -- waiting three weeks now to find out of their health insurance company - a subsidiary of Minnesota-based United Health Care - will pay for the bone marrow transplant.

"Every week that goes by without some kind of treatment we lose the window of opportunity," she McCall.

A spokesperson for United Health Care said the company cannot comment on a case involving a policy holder for "privacy reasons."

Meantime Kerry McCall is doing what any mom would. Every single thing she possibly can to save her son's life.

"I can't tell him 'you might die.' But I think he knows. And he will if we don't get this treatment. That's my fight everyday."

Information on ALD

Jack McCall's Caringbridge site

By Boyd Huppert, KARE 11 News Read Boyd's Blog

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