ILLINOIS — A toddler from DeKalb, born with a failing heart and life-threatening complications, is alive today thanks to Medicaid — but now her survival is at risk again as federal lawmakers consider major cuts to the program.
A story of survival and sacrifice
Twenty-month-old Marely Chavarria Santos has already endured more medical trauma than most experience in a lifetime. Born with a hole in her abdomen, a narrowed intestine, and a dangerously enlarged heart, Marely’s early days were a fight for survival. Her heart became so swollen it pressed against her lungs. Her mother, Kassandra Santos, remembers watching her daughter lose color, breath by breath.
Doctors at Lurie Children’s Hospital listed Marely for a heart transplant at just three months old. After 100 anxious days on the waitlist, the call came. A heart was available. With Marely’s condition worsening by the hour, her family prepared to say goodbye.
Miraculously, she made it to the operating room in time. The transplant was successful — a moment Santos calls “Marely’s miracle.”
Home care made possible by Medicaid
After six months of recovery, Marely came home in January. But keeping her alive outside the hospital is only possible because of Medicaid. The public health insurance program covers the cost of her ventilator, feeding tube, and in-home nurses trained to manage the machines that help her breathe and eat.
Without Medicaid, Santos says she couldn’t afford even a fraction of her daughter’s monthly care, which includes:
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$7,000 for a hospital-grade crib
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$450/month for nutritional bags
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$30,000/month in eligible nursing support
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Multiple weekly therapies to help Marely crawl, play, and speak
Even families with private insurance, like Marely’s, often rely on Medicaid for such medically fragile children. That’s because private plans rarely cover everything — if they cover anything at all.
“There’s absolutely no way families can pay for the care their children need to allow them to stay at home,” said Grace Knowles, a pediatric nurse practitioner at Lurie.
The threat of federal cuts
Now, the very program that saved Marely is under threat. The Republican-controlled U.S. Senate is debating sweeping cuts to federal Medicaid spending, which would reduce the resources available for in-home pediatric care.
Doctors, nurses, and parents are raising alarms that if these cuts pass, children like Marely may be forced back into hospitals — at double the cost — or worse, may lose access to lifesaving care altogether.
More than 3 million Illinoisans rely on Medicaid, including over 1,500 medically fragile children. But federal policy could push their care to the brink.
Families already stretched to the limit
Inside the Santos home, Marely’s living room is a mini-clinic. A whiteboard tracks medications. Her nurse, Giana Garcia, helps Marely learn textures and mobility. Meanwhile, her mom, now trained to provide advanced care, balances being both caregiver and advocate.
“I’m going to have to put her in a hospital,” Santos fears. “Then, her health’s just going to deteriorate because it’s not where she needs to be.”
Her voice joins those of other Illinois parents who’ve been through similar challenges — like Susan Agrawal, whose daughter Karuna lived 11 years thanks to Medicaid and inspired others before passing in 2014.
Agrawal now advocates for families facing the same fears. “This is entirely because of Medicaid,” she said. “Without it, kids like ours wouldn’t stand a chance.”
Why this matters for every Illinois resident
This isn’t just a story about one child. It’s about a system that quietly sustains the most vulnerable among us — and saves money doing it. According to the Illinois Department of Healthcare and Family Services, in-home care under Medicaid is far cheaper than hospital stays, averaging $145,000 per child per year — half the cost of institutional care.
If these children lose access to Medicaid, their families may be forced to quit jobs, rely on emergency services, or watch their children regress or deteriorate. And that could have ripple effects across the state’s hospitals, workforce, and economy.
“There’s a shared value in helping families stay together,” says Dr. Carolyn Foster, a pediatrician and researcher. “And Medicaid is central to that.”
This Could Be Any Family’s Story
Marely’s journey is not just a miracle — it’s a message. Her life is a reminder of what’s at stake when essential programs are on the chopping block. Whether or not you rely on Medicaid today, the health of our communities depends on ensuring everyone — especially our youngest and most vulnerable — can live and thrive at home.
What would you do if your child’s life depended on a policy vote in Washington?
Share your thoughts and stories with us at ChicagoSuburbanFamily.com — your voice matters.
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