CHICAGO (CBS) — Thirty-million children are covered by Medicaid, but under new health care reform proposals, there will be significant cuts to the program.

WBBM’S Lisa Fielding tells us about two Chicago area families who are traveling to the nation’s capitol to rally against the cuts.

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“I got my trach when I was five months old,” Elena Perez recalls as she lists off her medical issues. “I need a lot of medical supplies.”

The 9-year-old is a twin. Her identical sister is healthy, but Elena was born without an esophagus, with only one lung and her heart is on the other side of her chest.

“I was a working woman, an educated woman. You can never plan on this. I never dreamed I’d have to be on Medicaid,” said Elena’s mother Lindsay.

“She spent the first 228 days of her life in intensive care. I worked all my life. I had private health insurance, but when she was 5-months old, because of the lifetime limit cap, she lost her health insurance. I had no warning. All of the sudden, one day it was gone,” Perez said.

She and her daughter traveled to Washington, D.C and met with lawmakers about proposed cuts in health care.

“We met with Senators Durbin and Duckworth. We want to put a face on the issue. Medicaid allows my daughter to stay out of the hospital. She receives therapy at home. The cost of the medical supplies, there’s no way in the world I could cover those,” Perez said.

9-year-old Elena Perez with her sisters and mother, who already travelled to the nation’s capitol urging lawmakers not to cut Medicaid. (WBBM/Lisa Fielding)

“The House and the Senate bill designed to reform our health care system put children at grave risk. That’s because they are proposing to cut over 800 billion dollars from Medicaid over the next 10 years,” said Dr. Matthew Davis, Health Services and Policy Research, Lurie Children’s Hospital.

Dr. Davis will be accompanying two other families to take part in this week’s Speak Now for Kids Family Advocacy Day on Wednesday.

“In the last 6 months, there have been 100,000 media stories about health care reform, but fewer than 8-percent have been focused on kids,” Dr. Davis said.

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Medicaid covers over 30-million children. Six percent of these children have complex medical conditions
requiring ongoing and specialized care, and account for 40 percent of Medicaid spending on children.

6-year-old Layla Molina, with mother Ivonne Camarillo and father, who will be taking the trip to Washington D.C. to lobby lawmakers. (WBBM/Lisa Fielding)

Ivonne Camarillo’s 6-year-old daughter Layla Molina was born with a congenital heart defect.

“She gets fed through her G-tube so we need a lot of supplies. Medicaid covers 100 percent of her costs. It’s extremely scary to think about losing that,” said Camarillo who is leaving for Washington, D.C. on Tuesday.

“It’s exciting to be a part of something that advocates for Layla. It’s important that our lawmakers meet her and see why having Medicaid is important to her.”

Tangela Watson is also traveling with her daughter Jamela.

“Jamela was diagnosed with rare brain cancer,” said Watson.

The 6-year old was treated at Advocate Children’s Hospital and went into remission in June, but Watson says she still has a long way to go.

6-year-old Jamela Watson and mother, Tangela Watson will travel to Washington, D.C. in hopes to convince lawmakers not to cut Medicaid. (WBBM/Lisa Fielding)

“She had to undergo 52 weeks of chemotherapy and six weeks of radiation, she was on at least 10 different medications and had to have a feeding tube. Medicaid paid for it all. It was a lifeline at the time,” Watson said.

“I’m honored to be able to advocate for families like us. We don’t have any other options than Medicaid. It saved Jamela’s life. I want our lawmakers to know that.”

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“We’re all just a car accident away, one birth of a child away, you never know what’s going to happen. I certainly didn’t plan on this. Nine-10 years ago, I didn’t ever think I’d be on Medicaid and I can’t hold a job because I care for her full time,” Perez said. “Lawmakers need to know how much this affects these kinds of kids and their families.”