An Illinois health insurer rejected out-of-state treatment for a 4-year-old's rare disease five times. It relented, but why is getting an OK so hard?

PAYSON, Ill. - Jaxtien Miller doesn't seem very sick - yet.

On a recent Monday night, the 4-year-old bounced through his home in rural Payson, piecing together a giant firetruck puzzle on the kitchen floor. Then he sprang onto the couch, rolling around with his 11-year-old brother, giggling.

He then plopped all 49 pounds of his small, solid body onto his mother's lap for a snuggle.

But Jax's hands have started to shake, and he can no longer climb stairs on his own.

Those symptoms are just the beginning.

Jax has a rare disease called metachromatic leukodystrophy that could rob him of the ability to walk, sit and hold up his own head within the next year. Children with the disease typically die between the ages of 2 and 10.

There's no cure for the genetic disorder. There is a treatment that may slow the disease's progression but it cannot reverse damage that is already done nor restore abilities that are already lost, meaning time is of the essence.

Yet for most of the past two months, as his symptoms worsened, Jax and his family waited.

They waited for their Illinois Medicaid managed care insurance company, MeridianHealth, to approve treatment at UPMC Children's Hospital of Pittsburgh.

The insurer sent the family letters denying requests for coverage five times. The insurer said the hospital was out-of-network, and Jax should get care closer to home. Those familiar with the disease, however, say the