BLACKFOOT — Lili Hill has a lot on her plate.
The 17-year-old Blackfoot High School junior dances, sings and plays several instruments. She also takes college classes and participates in national competitions, all while maintaining a 4.0 GPA. But what many don’t see behind the very busy girl is the chronic pain she’s endured since she was 5 years old.
Still, Lili has never let that pain stop her — even if it means she just needs to step off stage, vomit and go right back to doing what she loves.
Now, with the help of a specialized institute in Spain, she may have found a hope for a life with less pain. But she is going to need some help getting there, so a family friend has launched a GoFundMe.
‘She wanted to be able to do everything’
For Lili, an interest in the arts started young. She has done ballet since she was 6 years old, and she starred in her first musical in first grade. All the while, she’s suffered from bad headaches, which at the time seemed like nothing to worry about.
“She wasn’t a complaining child,” said Jennifer Hill, Lili’s mom. “We just didn’t pursue anything because she’d say, ‘Oh, this kind of hurts.’ But then she’d be fine and just go off and do stuff.”
“Then in seventh grade, she would wake up every morning in so much pain she just couldn’t even focus on school,” Jennifer said, “which is really hard on her because she’s a perfectionist and she wanted to be able to do everything.”
So, Lili got an MRI. That’s when doctors found that part of her brain, the cerebellar tonsils, was extended 11 millimeters into her spinal canal — a condition called Chiari malformation.
Jennifer said patients with this condition usually undergo decompression surgery.
“They cut some bone, do some kind of heat thing where it shrinks the brain back up into the skull where it’s supposed to be, and they put a patch over where the bone was,” Jennifer explained.
So, Lili was sent to a specialist. It took a while to get in, and by the time they were ready to do surgery, Lili was in the middle of eighth grade and her dance season. Taking a break for surgery and recovery was unthinkable, so she endured the pain and held off until the summer.
“She came through that surgery (and) we thought, ‘This is going to be the ticket. She’s going to be great after this,” Jennifer said.
Lili did feel a little better for a while, but the headaches never went away. And over the past three years, they’ve gotten progressively worse again.
Over this time, Lili was also diagnosed with Ehlers-Danlos syndrome, which Jennifer said causes all sorts of issues in her tissue, nerves and joints. She said it goes hand in hand with the Chiari malformation.
Throughout all the pain, Lili never stopped doing what she loved.
She just completed her 29th musical. She’s also competed and performed with the Blackfoot High School Fillies dance team and drama company, the Blackfoot School of Ballet, and the Blackfoot Community Players.
Lili is also the district president for Family, Career and Community Leaders of America, or FCCLA. Through the program, she’s competed nationally twice.
Lili told EastIdahoNews.com that FCCLA and dancing are her favorite activities.
“It’s super fun, but it’s definitely hard on the days where I’m super sick,” she said. “Because every day I have a headache, but there’s days when it’s like my whole body hurts, and the headaches are worse, and sometimes I’m even throwing up — which is never fun.”
Lili’s drama teacher and a family friend, Jake Spjute, noted that in her most recent performance, where Lili played Scuttle from “The Little Mermaid,” the teen had to leave the stage to throw up and compose herself, and then returned to give it her all.
“But I guess when you love something so much, you’re just drawn to it, and you’re like, ‘Well, this is my life,’ so you just have to learn to adapt to it,” Lili said.
‘It’s pulling her head back through her spinal cord’
American medicine’s treatment for Lili’s condition is to fuse Lili’s C1 and C2 vertebrae to her skull. This would mean she could never turn her head again — and for someone as active as she, that doesn’t work out too well.
But the family has hope.
In Spain, they found a promising surgery. Jennifer said they had just spoken to the surgeon, who said that in some people, a band that runs up the spinal cord — called the filum terminale — stops growing.
“So, (the condition is) pulling her head back through her spinal cord,” Jennifer said. “They found that when they clip this, it helps. It doesn’t fix everything, but it helps so that it doesn’t continue to progress and get worse and worse.”
Everyone they’ve talked to who’s had the surgery said it helped immensely.
The only problem is that getting to Spain and having the procedure done will cost $35,000.
Spjute, Lili’s drama teacher, said when he heard Jennifer talking about mortgaging their house just so they could pay for the procedure, he knew he had to help. So, he organized a GoFundMe account to raise money for Lili’s surgery.
“The thought of waking not waking up every day, not in pain, just seems absolutely incredible,” Lili said.
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