TALLAHASSEE, Fla. (WCTV) - Almost three years ago, WCTV brought you the story of little Lilly. Born with a rare disease, every day of her life is a miracle and one that would not be possible without the 24 care she receives.
Fast forward to Thursday, where Lilly’s mother, Sara, says the insurance company informed her that Thursday is the last day she will have round the clock care.
Sara June Berry gets emotional sharing, “My baby is my everything, she is the prayer that I have been praying for since I was a little girl.”
Lilly is Sara’s miracle child. Sara’s kidneys were failing when she gave birth to Lilly at 26 weeks. Lilly was born with Congenital Hyperinsulinism of the pancreas, with a rare genetic mutation called Glucokinase.
In order to stay healthy and alive, every three hours Lilly is given a ‘cornstarch bolus’ through her feeding tube, and at times, to ensure her sugar levels remain high, she receives Glucagon, which is administered by her 24-hour care nurse.
Sara says since the day Lilly was born, she has always had a nurse by her side, “The last time we lost nursing care, Lilly dropped to 17, the ambulance barely made it in order to get her blood sugars up. If they did not make it right on time, she would have slipped into a coma.”
But now, Sara says that the hands that provide Lilly medicine and care will be gone as of Thursday night. She claims Staywell Insurance Company gave her a little more than 24-hours notice, that the current nursing agency she uses is no longer covered, and she will have to find a new agency to hire.
Amanda Moneymaker, the Branch Manager of NurseSpring, the agency Berry had been using, confirms the news to WCTV, “It is heartbreaking honestly, I mean we have grown very attached to Ms. Barry and her daughter, we have provided care for her for the last 18 months.”
Moneymaker states that they were notified late Wednesday afternoon of the change for Berry. Moneymaker also states that change will affect roughly 20 families in North Florida that require 24-hour pediatric nursing care, as well as the nurses that are employed with NurseSpring, who will now have to find new clients.
Moneymaker furthers, “It’s very unfortunate to hear that our clients will have to go through this change, and with this change, they might not have coverage.”
Sara, a working single mother is now met with a challenge she has been faced with before: Losing a job and even more, due to not having help.
“It was terrible, to lose everything that you own,” Berry breaks down, “to try very hard to keep a stable roof, a stable home, a stable environment for your child but to not have that option is terrible, it’s terrifying.”
According to statutes in place by AHCA, Florida’s Agency for Health Care Administration, in chapter 400 section 487, it phrases that families cannot be left without coverage and a nursing services agency must always be present for children who require it.
“There should not be a gap in service, especially when we have a client like Lilly that really needs the 24-hour nursing,” expresses Moneymaker, “There should be no gap, and there really is no reason for there to be.”
“We were both in shock,” explains Sara, “And they said no you are just going to go without coverage, um my next question was how will I keep her alive, if something happens, do I really know what to do?”
As Sara works to find answers, Lilly continues to fight. For now, on her own, until help arrives.
WCTV reached out to the insurance company several times via phone and email Thursday, but have not yet received a response.
The governor’s office says they are looking into the matter. We will update this story when we learn more.
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