Melanie loves swimming, playing catch, and jumping on her trampoline.
“She is just like any other 5 year old – super sassy,” her mom Austin Carrigg said. “She wants to be the boss and rule the world.”
Melanie is also part of a group of children with complex medical needs who share their stories with members of Congress. They call themselves “little lobbyists.” Children like her are putting a human face to the need for affordable and good-quality healthcare.
Melanie, who was adopted as a baby, was born with Down syndrome and is deaf. She also has Glycogen Storage Disease, which causes her to have low blood sugar. Growing up, her blood sugar levels would drop, causing her to go into a comma.
Austin would have to rush Melanie to the hospital. She no longer has to do that thanks to a device Melanie now has that reads her glucose levels every five minutes. The device, known as continuous glucose monitor, is paid for by Melanie’s Medicaid health insurance.
The device is one of the medical needs not covered by the family’s private health insurance. The family has health insurance through TRICARE, which is offered to military personnel and their families. Melanie’s father is in the U.S. Army.
Also not covered by TRICARE, unless it’s provided at a hospital, but is covered by Medicaid is Melanie’s formula. It works as a thickening gel and allows her to eat safely every day. Without Medicaid, the formula would cost Melanie’s parents up to $4,000 a month.
“There’s no way we would be able to afford this formula that she requires,” Austin said. “My daughter literally needs this formula to be alive.”
Medicaid also paid for an open-heart surgery that Melanie required at 8 weeks old. The cost of it exceeded $1 million.
Furthermore, Medicaid covers nursing care at home. Austin said TRICARE covers it as well but she’d have to be home resting. That means she wouldn’t be allowed to work or leave the house while Melanie is receiving nursing care.
By sharing Melanie’s story, Austin said she hopes to show her family is one of many benefiting from Medicaid. She added her 16-year-old and 13-year-old sons also have medical needs covered by Medicaid that are not covered by the private insurance.
“My children would not have everything they needed if we didn’t have Medicaid,” she said.