BLUFF CITY, TN (WJHL) – It’s the middle of the night and everyone at the Ware house has been sleeping for a few hours. Until now.
10-year-old Lily Ware’s sugar has crashed again, and mom, Heidi, is making her drink juice.
Lily has Type 1 diabetes. She was diagnosed at the age of 8.
“People are like, ‘I’m so sorry’ and I say ‘It’s fine, I just live with it,’” Lily said.
For Heidi, she said she definitely feels the weight of her responsibility to her daughter.
“As a parent, you know that their lives are in your hands,” Heidi said. “But, when you literally have her life in your hands — in that insulin or that pump — it’s scary when they’re discharging you, and you think one mistake. One mistake is all it’s going to take on my part that could do some major damage to her.”
Lily and her family have been living with her diagnosis, working to keep it under control. But there have been some drawbacks.
“(I like) going out with my friends. It’s like, ‘why can’t I do that?’ But, I usually get to do stuff with my friends,” Lily said.
Lily’s dad, Brandon, keeps a close watch on her food.
He said it’s not as easy as giving her lunch money for school.
“We have to pack her lunch, put her carb count on there and she has to be accountable for that,” Brandon said.
And despite her parents’ vigilance to Lily’s diet and care, there are times it gets out of control.
“She’s only had two incidents in two years,” Brandon said. “It’s very common for Type 1 diabetics to be in and out of the hospital with minor things.”
Despite her diagnosis, Lily still lives an active, busy life. She plays softball and loves to go swimming.
And her friends and teammates are supportive.
“My teammates come and check on me and ask how’s my sugar. We’ve really taught them,” Lily said.
She even has a funny shirt that reads “I know I have diabetes!!! Just give me the darn cupcake & and Google Type 1,” to show people who may not understand Type 1 Diabetes.
Heidi and Brandon are still protective of Lily, though. They want people to know Lily as a person, not a person with Type 1 diabetes.
“What people need to understand is these kids are normal. There’s nothing wrong with them,” Heidi said.
As for Lily, she refuses to let the disease define her.
“(At school), my name is not Lily, it’s Lily The Diabetic,” she said. “I don’t want to be the person that’s different than everybody else. I just want to be a normal human being. I’m just like everyone else. I don’t want to be named that. My parents named me that for a reason. It’s not Lily The Diabetic. It’s Lily.”
Heidi and Brandon told us that they wanted a better quality of life for their daughter that allowed Lily to be more independent.
“I’ve slept with her every night since she was diagnosed, because she doesn’t wake up,” Heidi said. “There are nights that I treat her and she has no recollection.”
That better quality of life the Ware’s are talking about comes in the form of a service dog that can sense changes in her blood sugar.
“The dog is trained to alert on her,” Brandon said. “If that doesn’t work, he’s trained to lay on her. If that doesn’t work, he comes to us.”
The dog can even watch over her from a distance, like when she plays softball.
“Say I’m at shortstop,” Lily said. “He (the dog) can alert on my mom that I’m low at shortstop.”
The decision to get a dog was easy, but paying for a service dog was another story.
“The dog was $18,000,” Brandon said. “She asked me and it was heartbreaking. I said, ‘Lily, it’s not going to happen. It’s just not going to. We can’t do it.’”
But they would do whatever it took to help Lily. A local church helped, as well.
Heidi said they were not members at Avoca Christian Church in Bristol, Tennessee, but they had friends who attended.
“They were Lily’s friends who started this whole fundraising,” she said.
“I remember them telling us ‘you raised enough money,’” Lily said. “And I just started crying, and was so excited.”
Now, the family is preparing for a dog they will name Dexter.
Lily has to help Dexter train to help her.
“You have to take cotton swabs and saturate them with your saliva, and we put them in jars and freeze them, and we’ll ship them to Oklahoma where he is on dry ice, and he’ll start training with them,” Lily said.
Heidi told us knowing the dog will be able to help watch over her daughter is a relief.
“What an amazing thing to have, another pair of eyes of your child,” Heidi said. “Somebody who can sense something we can’t sense. Somebody that can help her navigate.”
An amazing dog Heidi said will help them all get through.
“Love is greater than the highs and lows,” she said.
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