Skylar was born with a very rare birth defect called Schizencephaly resulting in fluid-filled clefts in her brain. Her condition is the second rarest known brain malformation, affecting only 1.48 out of 100,000 births. She had her first seizure when she was three months old, and throughout her 12 years she has had 14 brain surgeries, as well as other surgeries. She smiles all the time, but she has never been able to walk or talk.

Skylar was placed on TEFRA, a form of Medicaid, at birth. She met the definition of person with a disability and was able to receive services starting the day she was born. TEFRA give Skylar access to equipment and treatment she needs without putting a large financial burden on her family.

Skylar sees multiple specialists at Arkansas Children's Hospital on a monthly basis and requires a great deal of equipment to help maintain her health, including oxygen, a feeding pump and pulse oximeter. Skylar was recently approved for the Arkansas Medicaid Waiver after being on the waitlist for more than 10 years. This waiver allows Skylar's family to hire caregivers to assist with Skylar when she is out of school.

"Having Medicaid is a huge relief for families with medically complex children," says Lindsey. "I have private insurance for Skylar, as well, but the costs associated with all her care and equipment would be more than we could afford if we had private insurance only. We are grateful for programs like TEFRA and Medicaid because I place as much value on Skylar's life as I do any child. No parent asks for their child to be born with a birth defect or special needs. These programs are a necessity to help care for our children and they are worth it."

Skylar has been a patient at Arkansas Children's Hospital almost her entire life. At ACH, she has received life-saving treatments in a family-centered environment where her mother is welcomed as a key member of Skylar's health care team. "I have a voice," Lindsey said. "To me that is extremely valuable. I know her better than anyone."

Skylar has already lived longer than anyone expected. She's a happy girl with a magnetic laugh. She goes to school every day and comes home to a room with shelves that are filled with trophies and tiaras she's won.

She's also been regularly ticking off items on a bucket list Lindsey created not long after Skylar was put into hospice. She's been to New York, where she got to meet Derek Jeter and see a Broadway show. She's gone fishing and been on a sleepover. She was even inducted into a sorority at UALR.

"Each year I feel as if the doctors at Arkansas Children's Hospital do something to save my child. When you have a child you know is terminal, most precious thing anyone can give you is time. Arkansas Children's Hospital has given us 12 years and that is something for which we will always be grateful."

On June 27, patients and families from children's hospitals across the country will travel to Washington, D.C., to advocate on behalf of children's health during the 14th annual Speak Now for Kids Family Advocacy Day. Lindsey Overman and her daughter Skylar will serve as the champion family from Arkansas. They will meet with members of the Arkansas delegation to share the story of their health care journey to illustrate why all children need children's hospitals, and how public policy can influence their access to health care.