Meet Skylar: 2018 Family Advocacy Day Champion

Skylar is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Skylar will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.

Skylar is an inspiration. Her parents were once told that she would not live past her first year, but today, Skylar is a 12-year-old girl excited to journey to the nation’s capital and advocate for children’s health.

Skylar was born with bilateral open-lip schizencehpaly — a brain abnormality. She first received treatment at Arkansas Children’s Hospital when she was 3 months old. While she was initially treated for seizures resulting from her brain abnormality, she is now treated for other diagnoses that have resulted from her condition.

Skylar receives treatment at Arkansas Children’s two to three times a month, and has required admission to the hospital numerous times since initially receiving treatment. Skylar’s parents chose Arkansas Children’s because it is the only hospital in the state that offered the specialists she needs in one location. Skylar has private insurance, but she also receives coverage under the Medicaid program because of her many health care needs. The two insurance programs work together to get Skylar the care she requires.

But even with world-class treatment, Skylar’s health has declined due to neurodegeneration caused by her brain abnormality. “It’s been Arkansas Children’s that have given us 12 more years,” Skylar’s parents say. “They have truly gone above and beyond and have fought for her. That is why she has been able to live the life that she has and have an amazing quality of life. Even though her health might have regressed, they have given us 12 years, and that’s more than anyone expected or imagined. In spite of it all, she continues to thrive.”

Though Skylar was once on hospice care, she has been discharged thanks to improving health. She is an avid dancer and cheerleader, and has formed special bonds with the palliative care team at Arkansas Children’s. Her parents explain that, “Her plans for the future are to live one day a time, enjoy every day, live the best life with the most quality of life that she possibly can, and continue to change the lives of others in the process.”

Join us in welcoming Skylar to 2018 Family Advocacy Day.

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commented 2018-06-25 13:05:22 -0400 · Flag
So excited that you were chosen to represent children like Skylar, Lane, and so many others who are Medically Complex.