A Missouri Mom’s Story: Medicaid Made the Difference
Crystal Lyon was 18 years old when she found out she was pregnant. She was still covered by her parents’ insurance, but she knew she would still need assistance affording prenatal care. That’s when she enrolled in Medicaid, a decision she didn’t realize at the time would later save her daughter’s life.
Crystal’s daughter, Ari, was born three weeks early after a mostly smooth pregnancy, aside from preeclampsia near the end. Ari didn’t have a NICU stay. Crystal said she was “healthy, happy, beautiful.” But after Ari’s first pediatrician appointment, a small family detail shifted both Crystal and Ari’s life.
Ari’s father – Crystal’s husband – had retinoblastoma as a toddler. Ari’s pediatrician didn’t notice any issues upon examining her eye but still made the decision to refer her to St. Louis Children’s Hospital’s ophthalmology department “just to cover all bases,” Crystal recalled.
At the hospital, Ari’s genetic testing revealed that she inherited the same mutation that caused her father’s cancer as a toddler. Ari was only three months old when she had her first sedated eye exam, and that’s when doctors discovered the grade C unilateral retinoblastoma in her left eye.
“Eight days later, she started her first rounds of chemotherapy, and she got her first external port placed,” Crystal said.
Ari’s treatment became Crystal’s full-time job. They were in and out of the hospital every month for multi-day stays, and at home, Crystal was giving Ari injections to boost white blood cell counts and changing her port dressings to prevent infection.
While in the hospital, Crystal recalls having to hold Ari down for procedures too traumatic for most parents to imagine.
“I just had to sit there and keep telling her that it was okay, even though I didn’t know if it was going to be,” Crystal said.
The doctors at St. Louis Children’s warned that if this version of chemotherapy didn’t work, Ari would need intra-arterial chemotherapy, which is delivered through a catheter inserted through the groin, then threaded up into the brain and directed to the eye. Crystal said this was “very, very scary” to even have that thought in her mind.
In July 2024, doctors had reported that Ari’s tumor was gone; however, new sub-seeding cancer cells were developing in the vitreous of her eye. This meant Ari needed two more chemotherapy injections into her eye.
Finally, in October, Ari was moved from active treatment to monitoring, where she had a sedated eye exam every six to eight weeks and gets an MRI every six months.
Throughout this terrifying journey, Medicaid was the one constant that kept the Lyon family afloat.
Crystal had applied for coverage while pregnant. She spent six hours on hold just trying to get her daughter added to her health plan. But once Ari was finally added, everything was covered – from prenatal visits to post-surgery care to $400,000+ in cancer treatment.
“Her medical bills totaled out to, I think it was $421,131 and like, 94, 97 cents,” Crystal said. She looked through the claims to confirm. Ari’s eye exam, which she needed every few weeks, totaled $10,000. The MRIs were $25,000, and Ari needed those twice a year.
Medicaid covered everything.
“I didn’t have to pay a cent,” Crystal said. “And for that, I am so grateful.”
Medicaid gave Crystal more than financial relief. It gave her space to parent, to grieve, and to fight for her daughter’s life without the crushing weight of medical bills and impending debt. Medicaid was life saving for Crystal and her daughter. It made survival possible.
Still, accessing health care in rural Missouri wasn’t easy. The closest provider who could treat Ari’s cancer was an hour away in St. Louis. Crystal and her husband traveled back and forth for every appointment and hospital stay. They had hoped to stay at the Ronald McDonald House, until they discovered the distance requirement was 50 miles – they lived 49 miles away.
“Every single admission, it was like a trek to get there. You felt like you had to bring the whole house for a chemo admission,” Crystal recalled.
When politicians in D.C. began talking about cutting Medicaid and requiring parents like Crystal to work to stay covered as part of the Republican budget bill, fear turned into fury for Crystal.
“I can’t go to work because Ari has cancer. She can’t go to daycare because of her compromised immune system,” Crystal said. She started calling family members in tears, including her mom. “I said, ‘Mom, I don’t know what I’m going to do. I don’t know if my daughter’s going to live.’”
Crystal grew up in a conservative Christian home. As a child, she read the Bible front to back. While Crystal’s views have shifted over time, she says her political views are grounded in the faith she was raised with, including her views on health care, something she says should not be a bipartisan issue.
“What I took from my Christian beliefs is that everybody deserves a chance,” Crystal said.
This belief extends to reproductive rights. It extends to Medicaid. It extends to how she operates in life.
Crystal adds that “you can’t be pro-life” and support the Republican bill, which was signed into law by the president on July 4, 2025, and is slated to cut trillions from Medicaid while gutting rural hospitals in the process. She asks, “Once a baby’s born, why aren’t we helping them with health care? You’re not pro-life, you’re just pro-birth.”
Crystal’s voice sharpened.
“To the politicians who are wanting to cut Medicaid, I would invite them to come look my daughter in the eyes and tell her, and then look at me, and tell me that her life does not matter to them.”
Crystal, as Ari’s mother and full-time caregiver, is blunt in her message to politicians who claim to be “pro-family” while tearing down the support those families rely on. She is no longer staying quiet and she’s not afraid to speak out.
“I’m not terrified. I am not scared of a politician,” she said. “I’m advocating not only for my daughter, but for thousands of other children across America.”
Crystal, now 21, carries the wisdom of someone who’s walked through fire. She holds up a hospital-issued binder labeled as “The Ninth Floor Parent Handbook” and flips through the pages of after-visit summaries and emergency procedures.
Her daughter has endured 17 procedures since being born. Crystal had to memorize protocols for line flushing and infection risk.
“This handbook, I had to flip through if there was a medical emergency, I would have to rush my daughter to the ER,” she said. Just holding the binder brings back the trauma.
“It was very, very, very traumatic. And the fact that I now have to relive all those things just to advocate for children is so sad,” Crystal said. “And it’s disgusting that I have to do it. But I’m going to continue to do it for America’s children.”
Ari is now nearing the end of her cancer treatment journey. She has an upcoming clinic and eye appointment at St. Louis Children’s Hospital and will soon be able to ring the bell, surrounded by her mom and dad and other family members.
“Medicaid saved my daughter’s life. Without it, I don’t know what our lives would look like.”