‘People are loving us through it’
Sara June Berry with her daughter Lilly June.
Sara June Berry is a mother to five-year-old Lilly June. June was born with a rare form of congenital hyper-insulin that was genetically passed on, weighing just 1 pound and 6 ounces.
This condition causes the body to overproduce insulin, causing the blood pressure to drop to fatal levels. June’s pancreas was surgically removed. Only 2% of her pancreas remains but still create “an extraordinarily amount of cells that in turn make too much insulin.”
June needs around-the-clock care to ensure that her blood pressure is stable.
“We give her apple juice, or if she needs her feeding, like her actual pureed food, give her that,” says Berry. “And then if it drops below 59, then we call Shands (Hospital in Gainesville), and then Shands tells us what to do.
“They’re always one call away,” she says. “And we talk directly to a doctor each time. That’s how serious they take it. Shands has never had a child like this before. It’s very rare. She’s the only one in the whole hospital.”
Berry seeks to have June in public school to give her a normal life and give June access to the therapy the school provides.
“If she goes to school, she will get the therapies and education that she needs. But most importantly, learn to eat and drink by mouth so we can get her off the feeding tube.”
June has been on a feeding tube all her life and is still on it due to being unable to access therapy through Medicaid.
“If she would have had all the therapies this whole time, she’d probably be eating right now,” she says. “But we couldn’t get them because Medicaid only pays for two providers in this area, and they don’t come out to the home, they only go to the school.”
Berry also wants to get June into the school to get behavioral therapy.
“She’s been through a lot, and she does not understand being poked on every hour. She doesn’t like it. It hurts, and she’s tired of it. I think it would help her instead of getting so frustrated because she can’t tell us it hurts, at least she could talk. And she has a behavior specialist to help communicate with her because they’re experts in it, and they send them to the schools, and it’s free therapy.
“I hope to get the tube out at least, and ultimately, I want to see her happy. I want to see her smile. I want to see her with other children, and she loves other children. She doesn’t have a lot of friends that want to come over. We’re kind of here by ourselves.”
Throughout the process of getting June into school, Berry says the superintendent has been very supportive of her goals of getting her in school. Berry is waiting for answers from the nursing agency that is working with the school board to get June in school with the proper care.
“The school board wants a legal memorandum signed by the nursing agency before they send the nurses on the school property,” Berry says. “They’re trying to figure it out because they’ve never had a child like her. So they’ve never had to do this for Wakulla County.”
Berry says the nursing agency hasn’t signed off on it yet and that “they’re having their legal team look at it.”
The background checks haven’t started yet because “the schoolboard says it’s going to be $75 per nurse, and the agency doesn’t want to pay. We just haven’t gotten anywhere yet. I know that eventually, she will go to school, at least I hope she will. That’s what they’re telling me.”
“I know that there are families that don’t know what to think. So I want them to know that we’re just like anybody else. We just live with 24/7 care. Different nurses, sometimes we don’t have permanent nurses. Every day is different.
“I want people to see it’s OK to talk to us. Some people don’t really know what to say to us. They just don’t understand, and they don’t. Or they feel there’s nothing you can do, but there is.
“You just got to get out there and fight because if you don’t, she wouldn’t be here. That’s what I had to do from day one. So I’m just going to keep on keeping on, and hopefully, this will work.”
Berry donated her pancreas and June’s to research.
“It won’t be anytime soon, but maybe one day they’ll have something to help someone else,” she says.
Berry is also looking into trying diazoxide treatment, which works by taking away some of the excess cells the pancreas is producing, resulting in less insulin.
Berry and June have both had allergic reactions to this medication in the past.
“This medication made both of us have fluid all over our body, only me and Lilly and no one else in the entire world has taken this medicine. They want to try it because they think her body may not react like that anymore since she’s older now.
“We’re going to give it one more try,” she says. “Because the transplant looks like it’s going to be hard to get it, it seems like Medicaid does not pay the whole amount.” June is on the list for a transplant, but finding the same blood type and it being a child’s pancreas makes it “very hard to find. We’re just waiting. But I hope during the time that we wait, we get to have normalcy for her and quality of life.”
“We’re just waiting. We’re not transparent. We’re waiting and hoping that a miracle will happen because it already did. I believe that God has a plan.” Berry envisions her daughter June being able to live a long life, “that’s what I hope for. But ultimately, too, when she looks back at all of the struggles that she has gone through, I want her to go, ‘I went through all that, but I also got to help people. Boy, oh, boy, no matter how many scars I got on this body, those scars meant something.’ ”
Berry wants to encourage other families going through similar struggles.
“I wish things could be better, and I’ll get to where I’m not as hopeful, and I have to pull myself out of it. But there are people that can’t, and I want to give encouragement to others that can’t. I want them to know that there is help. They have to be active and proactive about it, and they have to advocate, whether it be for themself or their family members, because they won’t get anywhere if they don’t. I also want the families that are out there with children that don’t have an element, so to speak, to realize they’re children. All they want is to have a friend.”
Throughout everything, Berry didn’t think she would get help from the people in Wakulla, “but it turns out that most of the help we got was from the people here, so I just want to say thank you to everybody as well. People loved us through it, and they still are loving us through it.”