HOUSTON (FOX 26) - Coming into this world nearly killed little Chris Coker - a troubled delivery that almost took his Mom's life too. Every day since has been a battle to survive for the now 3-year-old challenged with the genetic abnormality known as Apert Syndrome.
"A child from day-to-day, you don't know if he is going to wake up and you do everything you can to make sure you get one more day," said Jessica Coker, Chris' Mother, her voice cracking with emotion.
With the help of Medicaid funding for medically fragile kids Jessica and her husband Shawn Coker assembled a mostly Dallas-based care team that's collectively kept their child living and making steady progress.That progress has made the deep uncertainty looming in coming months difficult to bear.
"He has 23 doctors and we are looking at losing 16 of them," said Jessica.
That's because Chris' Dallas-based Apert safety net is just weeks away from total disruption.
On November 1st, a cost-cutting state program will force thousands of families like the Cokers to abandon their medical specialists and start from scratch with providers selected not by parents, but by Health Maintenance Organizations.
These HMO's are for-profit companies who've been authorized by Texas lawmakers to both deny treatment and limit these fragile kids to medical care within very specific regions of the state, a provision which limits Chris to care in the Houston area, but not in Dallas where his Apert Syndrome specialist practices.
Angry families of fragile kids are calling the new restrictions a "Texas version of Obamacare".
"We are going to lose children. Kids are going to die, just to be honest with you," said Shawn.
To those suggesting families who reject what the state offers simply pay out of pocket, Jessica Coker presents powerful perspective.
"The year Chris had his skull reconstructed, his fingers reconstructed, his toes reconstructed and his heart repaired, our-co-pays with our private insurance was $1.1 million. That was our co-pay," said Jessica.
The Cokers and thousands of other parents of medically fragile children are begging Governor Greg Abbott and the Texas legislature to take a hard, second look.
Their kid's lives, they insist, may very well depend on it.