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Local family to fight threats to pediatric care in Washington | Health

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Local family to fight threats to pediatric care in Washington
Health, News, Politics
Local family to fight threats to pediatric care in Washington

Apollo Beach, FL -- Next week, a local family, along with 30 other families from across the U.S., is bringing their story of heartache and hope to Washington, D.C. to help Congress understand the importance of protecting pediatric care and their hometown children's hospital, St. Joseph's Children's Hospital, in the face of growing budget concerns.

Congress is discussing proposals to cut the program’s funding by $1 trillion during the next decade and impose a cap on the amount the federal government can contribute.

The Apollo Beach family hopes to bring attention to potential new barriers these cuts will create for pediatric health care as part of the National Association of Children’s Hospitals (N.A.C.H.) Family Advocacy Day. 

The Boykin's 3-year-old son Justin, who was born almost four months early and weighed just 1 lb, 6 ounces, has cerebral palsy, grade III and grade IV brain bleeds, developmental delay, seizures and other health conditions related to prematurity.

The Boykin family will share with lawmakers their own experiences with having a child with special health care needs, including the challenges of balancing work with frequent medical appointments, limits to their Medicaid coverage and the importance of having a “medical home” for children with complex and chronic conditions.

“My son is alive today because of the treatment he received in St. Joseph’s Children’s Hospital’s Neonatal Intensive Care Unit three years ago, and the care he continues to receive in the hospital’s Chronic-Complex Clinic,” said Justin’s mother, Tawn Boykin. “We hope sharing our story will help policymakers recognize the need to protect and preserve quality health care for kids.”

The July 25-26 event includes one-on-one Congressional visits with Representatives Kathy Castor, Richard Nugent and Dennis Ross, a tour of Washington D.C. and a celebratory dinner to honor the children and their families.

St. Joseph’s Children’s Hospital’s Chronic-Complex Clinic has been recognized nationally for its innovative work with medically complex children. Serving as a “medical home” for patients like Justin, the specialized clinic provides consistent, accessible and coordinated primary care, resulting in healthier, happier and higher qualities of life for hundreds of children throughout Florida.

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