TAMPA, Fla. — A Tampa Bay area mom is advocating for kids with medically complex lives and the importance of Medicaid as she deals with the ups and downs of her daughter’s own challenges.
Katrina Michel of Sarasota explains shortly after her daughter, Liliana, was born, doctors realized she had some challenges.
“They started adding up her anomalies: she had like her floppy ear, her echocardiogram was abnormal, and she failed all her newborn hearing screenings, and she had some feeding difficulties and a little bit of a facial palsy by her lip,” said Michel.
Liliana, who is now 5, was diagnosed with CHARGE syndrome, an extremely complex syndrome involving extensive medical and physical difficulties that vary from child to child and can affect about one in every 8,000 to 10,000 births, according to The CHARGE Syndrome Foundation.
"She’s always at risk of being completely blind, and she’s already completely deaf, so it just makes us that much more cautious of everything,” said Michel. “'H’ is for the heart defect, which she was born with four."
Michel says Liliana has been a patient with Johns Hopkins All Children’s Hospital since she was born. She says her daughter has been under anesthesia 20 times and has seen about 35 doctors and specialists.
“Thank goodness for the hospital getting us squared away with Medicaid, because I sometimes see little things that’ll come up, even just for her medications, like $400 a month, and I’m like it’s no cost for us here, but I’m like, ‘Wow, just for that one packet for her list of medications this long,” said Michel. “It’s frightening to think.”
Recently, Michel advocated for kids with medically complex lives and the importance of Medicaid to lawmakers virtually as part of the Speak Now for Kids Family Advocacy Week.
“That was really a fun thing to kind of get together and meet some of the lawmakers and just kind of stress the importance of Medicaid and let them see Lily and that kind of stuff, but there’s still just so much more to be said in every category, but what an event,” said Michel. “We've got to start somewhere and sustain the importance of Medicaid for children like Liliana in all kinds of situations and cases,” said Michel.
Despite the challenges, Michel says Liliana is still a happy kid, and while she continues to advocate, Michel takes each day one at a time.
“There’s a lot of times too where you’d be four appointments in one day, all over town, but then you just take a couple minutes to sit on a park bench afterward to snuggle your baby,” said Michel.