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Medicaid Matters for Kids Mondays - Luis

Speak Now for Kids is celebrating Medicaid’s 53rd birthday with blogs highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Crissty — Luis’ mom — to revisit Luis, a Speak Now for Kids’ Family Advocacy Day alum and current patient at Children’s Health – Children’s Medical Center Dallas.

My son was diagnosed with a rare cancer of the retina at 6 months old. I was devastated when I first heard about the conditions and the procedures that Luis has to endure at such a young age. Luckily, the cancer was caught before it had spread. But to ensure his healthy future, doctors were forced to remove the affected eye. Following the surgery, Luis underwent four rounds of chemotherapy and speech therapy.

I can’t imagine what his life would be like without Medicaid. I probably wouldn’t be able to take him to see the specialist that diagnosed him with cancer — simply because I can’t cover the cost. Our family relies on Medicaid to keep him healthy, it’s there for any special needs he might have as a cancer-survivor and also for the normal preventative checkups all kids need. As a single mother, I have to work and take care of Luis at the same time. I wouldn’t be able to afford Luis’ treatment and checkups on my own.

Thankfully, it has been more than 10 years since Luis’ last chemotherapy treatment. Even after beating cancer, things haven’t always been easy for my son. During his first grade year, Luis was bullied by classmates about his glass eye. It breaks my heart to see that Luis was treated differently because of his physical appearance. Instead of letting it get him down, Luis used those experiences as inspiration to write his published book. “Todd the Odd Boy” is a story about bullying, forgiveness and redemption.

For Luis, writing serves as a form of healing and positive expression. He has also become a passionate advocate who wants to help other children like him. He motivated me to advocate for his needs and the needs of other children like him.

We met with our members of Congress last month at Speak Now for Kids Family Advocacy Day to share information about Luis’ health journey and the importance of children’s health care. It was an honor representing Children’s Health – Children’s Medical Center Dallas to speak on behalf of the kids and families across the nation who depend on Medicaid. Luis enjoyed every second of it. He could really tell his story at a level well beyond his age. Luis even brought his published book on Capitol Hill to ask for autographs from the senators and representatives.

Check out Luis’ original 2018 Speak Now for Kids Family Advocacy Day biography.


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