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NORTH TEXAS (CBS11) – Keegan Harrison has more health challenges at 9 years old than most adults ever have: Because of his genetic immune disorder, he’s had kidney and intestinal failure, 11 strokes, and he’s recently been diagnosed with dementia.

And this is after he had a heart transplant right after birth.

His father, Gray Harrison said, “It’s probably nine medicines in the morning and five or six in the evening we take. And that’s actually come down over the years from probably 20 in the morning and 20 in the evening.”

Keegan is one of 5,600 kids in the state’s medically dependent children’s program, which is partially or fully paid for by Medicaid, depending on the child.

Keegan’s mom, Maddie Harrison said “These are the State of Texas’ most fragile children.”

Keegan Harrison with mother, Maddie (CBS11)

Keegan Harrison with mother, Maddie (CBS11)

But the Harrisons say they’re worried about changes starting November 1, when the state moves these children to a new managed care program called STAR Kids.

They say they will have to change at least five of their son’s 14 doctors because they don’t accept medicaid, which will be required.

“That’s going to interrupt the continuity of care,” said Gray Harrison. “Especially if a curveball gets thrown to one of these kids health-wise, how does that team react to help that kid?”

For months, Harrison and other families have lobbied state lawmakers to keep these changes from happening.

They said they haven’t had luck. but they’re not giving up yet.

The Texas Health and Human Services Commission says it has listened to parents’ concerns and is allowing these children to continue seeing existing doctors for up to one year.

Mrs. Harrison said, “They sound good in theory but in practicality, they start to fall apart.”

In all, 180,000 children statewide, most of them healthy, have been moved to this new managed care program.

Maddie Harrison wants lawmakers to exempt these medically-dependent children from the program.

Until then, “I’m scared out of my mind,” she said.

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