APOLLO BEACH, Fla. - The Boykin family from Apollo Beach, along with 30 other families from across the United States, is bringing their story of heartache and hope to Washington D.C. Officials from St. Joseph's Children's Hospital will be along for the ride, and with good reason.
The hospital's Chronic-Complex Clinic has been recognized nationally for its innovative work with medically complex children.
It was established ten years ago as a "medical home" to combine doctors' visits, appointments and treatments, and allows children to see up to as many as eight specialists in one visit.
Three-year-old Justin Boykin is one of nearly 1,000 children who benefit from the clinic. He was born almost four months premature and weighed just one pound, six ounces.
He has cerebral palsy, brain bleeds, seizures, developmental delay and other health problems related to his premature birth. His mother, Tawn, is grateful for the help she's received from the clinic.
"I don't have to try and remember everything," Boykin said. "There was so much going on. Each doctor, each appointment visit we had, they knew exactly what was going on, what was done, when it was done".
Politically, the topic of Medicaid cuts is a hot button issue, one that will be brought up next week. Congress is discussing proposals to cut the program's funding by $1 trillion during the next decade.
The flip side of that, according to St. Joseph's officials, more than half of the children who seek care at children's hospitals are insured through Medicaid, which pays half of the comparable services of Medicare.
"These children, unfortunately, were bouncing from one emergency room to another, one pediatrician's office to another," said Keri Eisenbeis, the Director of Government Relations for St. Joseph's Children's Hospital. "Just because they're so complicated, they intimidate regular physicians."
Justin Boykin has been making strides, almost literally. In March, he began receiving botox injections in his thighs and hamstrings to loosen tight muscles that make it difficult for him to stand, balance and walk. Now, he travels the length of the front hallway in his home twice per day.
"I'm going to fight for continued funding and support foir children's hospitals and the Chronic Complex Center," said Tawn Boykin. "To let them know that we need this. Without this, I don't know where my son would be."
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