BRYAN, Texas — Melanie Oellig's nine-year-old son, Creed, has over 20 different diagnoses, including Gould's Syndrome--a rare, genetic, multi-system disorder. It's characterized by abnormal blood vessels in the brain, eye development defects, glaucoma, muscle disease as well as kidney abnormalities.
The full extent of the syndrome's characteristics are not fully known, but Creed lives with them.
“He had his first stroke in between 18 to 22 weeks in-utero
, and at that point they started monitoring him closer and closer and it progressively got worse,” described Oellig.
Creed has needed 24-hour care since he was born, but the post-COVID Medicaid renewal process has taken away the resources he needs to survive, despite him being on the waivered, Medically Dependent Children Program since he was three.
“He needs these medications, he needs this, this and this, and they're like well you might have to pay out of pocket and I'm like one bottle of his medication is $3,000 and he takes eight bottles a month, like I can’t afford that,” Oellig explained.
The Medically Dependent Children Program, MDCP, is supposed to waive regular Medicaid requirements for parents of terminally ill children, this includes proving them with nursing care and assistance, which are essential to Creed’s life.
In the end, Oellig had to turn to her representatives just to make sure her request didn't fall on deaf ears.
“I called the governor, I called the congressmen, I called the senator, I was calling everybody. I called the ombudsmen and she was like, you just have it give it time, and I was like if my kid dies can you give him back to me?”
After more than five hours of calling and waiting, Melanie was able to get her services back, but she knows other parents of disabled children are experiencing the same issue.
Oellig wants her story to bring awareness to a situation that has caused distress to many families.
“Most of these kids are dying, they’re terminally ill, there's nothing we can do to make it better, but they're putting these families in a spot where they're already stressed out.”
Melanie has also been documenting Creed's journey online on Facebook. Click here to view the page.
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