HOUSTON – This November, a change in Medicaid means some of the state's most critical care kids will lose teams of doctors that's taken their whole lives to obtain.
Maddox, Jessica and Trip are a few of the thousands of kids who could lose their doctors the physicians who’ve been treating their delicate syndromes.
"Cerebral palsy, epilepsy, vision impairment, hydrocephalus, just to name a few," Erika Cain said, listing several of the syndromes her son's diagnosis includes.
Some of the mothers who spoke with Channel 2 Thursday said their children had up to 20 syndromes already diagnosed, and there could be more.
"Well they told me that she wouldn't make it past three," Amber Marin said about her daughter's life expectancy.
Right now, the state has what’s called the Medically Dependent Children's Program.
It covers what these family's private insurance will not.
Historically, children with these conditions could not be cared for at home because of high expenses and the need for constant medical attention. Instead they were put in nursing homes.
"I would not do that. What would happen is my child would die. I wouldn't put my child in a nursing home but I would eventually not be able to keep him healthy like they are, they're keeping him alive they're not keeping him healthy," Vanessa McNear said.
This fall, a cost-cutting effort Texas lawmakers approved would allow HMOs to limit specialists for these families, and these moms worry new providers won't have expertise in their children's unique conditions.
"They're private companies, they're trying to make a profit," Shawn Henners said. "Who's going to suffer? Obviously the kids are not going to get as much care as they get now."
"Access to his specialist is imperative to his health, the trust that is built between parents and the doctor and the care of their child is vital," Cain said.
With the clock ticking, mothers have formed the group called Protect Texas Fragile Kids (http://www.protecttxfragilekids.org). They are begging lawmakers to give them special exemptions.
"It's an untested system, so if you throw our special needs children within that untested system it's very dangerous," Marin said.
With complete sincerity, she said their kids could die.
"Nobody wants to lose their child, we want to prolong their life as much as we can. I don't think we should have to fight the system for that," Tiffany Malbrough said.
Moms from Protect Texas Fragile Kids go back to the state Capitol next week to try and persuade lawmakers to let them keep their current Medicaid plans.
For more information on how you can help or how to contact legislators, you can click here: http://www.protecttxfragilekids.org/what-you-can-do.html