Baby Henzley

GREAT FALLS - A family says they're scrambling to get coverage for their baby's rare health issue.

Ashley and Brandon Walker were raising their oldest daughter, Holly, and excited to have a second child. But this time around, everything was different.

"There in Missoula is when we found out that our daughter was going to be born different," Ashley Walker says.

Baby Henzley is diagnosed as being the only child in the world with a specific chromosomal abnormality, which affects everything from her head to her toes. Doctors gave life expectancy estimates ranging from one day to 20 years.

She currently sees 19 different medical providers and requires regular trips to hospitals across the state and in Seattle.

The family relies on Medicaid coverage to pay for Henzley’s hefty hospital bills.

And a few weeks ago, the Walkers say they were told Henzley would lose all Medicaid coverage on Dec. 1.

"If we lost Medicaid again, it would again be detrimental. We would have to uproot our family and move out of Great Falls and move to Washington, somewhere closer that has better medical coverage."

Under current Medicaid law, a family of four in Montana can earn just over $34,000 and still be eligible for Medicaid benefits. That’s because current law states eligibility must be no more than 128% of the current Federal Poverty Level, which sits at $25,100 for a family of four. For the Walker family, they say it's typical case of ‘we make too much to qualify, but not enough to actually afford it.’

But there are programs for these situations. You can get what's called an SSI form, or "Supplemental Security Income", or be enrolled in the “Big Sky Waiver” program.

The Walker family has an SSI form, and thought they were already on the waiver program... until suddenly, they weren't.

"With that, we thought she was going to be safe with Medicaid," they say. "We wouldn't have to worry and fight as much anymore because she was on it. Come to find out, a couple Fridays ago when Henzley had surgery; we had got a phone call from our lawyer stating she is not on Big Sky Waiver. So we questioned it. We called them. And we're back to square one."

They had all their papers, they filed all the correct forms... so now, the question is: where did the Walker family go wrong, if at all?

KFBB reached out to the Department of Public Health and Human Services for an explanation, and was told they are continuing to assist the family.

And just yesterday, Ashley received an email explaining Henzley's coverage has been extended, so long as her total resources in the bank do not exceed $2,000.

For the Walkers, it's a blessing. And they're so thankful. But Ashley says the system isn't doing any favors for people who are trying to be honest.  In fact, she says quite a few people have been forced to make tough family decisions just to get coverage.

"Having to lie to get their child coverage just astonishes me. We need to be the change, we need to change the system because the system is failing our kids. Why should you have to lie, why should you have to quit your job, why should you have to divorce to get your child coverage?"

For now, the Walkers are busy enjoying the time they have with little Henzley, who they call their “million dollar baby.”

Despite now having full Medicaid coverage, Ashley Walker says their journey isn't over. She anticipates going through something similar to this with the Medicaid office again in the future. But still, she wants to raise awareness that even in small Montana communities, there are children suffering from serious medical conditions without the proper care they need.

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