Most kids write letters to Santa to ask for toys or video games or the hottest new accessory, but a 10-year-old Greenwood girl didn’t want anything for herself this year.
Right before Emily King did her homework one night, she thought about her friend and dance teacher, Kylie Sullivan, who has Ehlers-Danlos syndrome, which has had her in a wheelchair the past three months.
King looks up to Sullivan. She wanted to help her in some way but didn’t know how. So, she turned to the one person who is known to grant holiday wishes this time of year: Santa.
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She sat down and wrote a letter to him, asking if he can help Kylie walk and dance again. In the opening of her letter she wrote, “I know I wrote to you a few days ago, but cancel the things I asked for Christmas because I only have one thing on my Christmas list.”
“I’ve seen her pass out on the floor because of her disease, and I was like, I feel so helpless … so I wrote a letter to Santa.” King said. “I felt like I had to.”
Ehlers-Danlos syndrome, or EDS, is a rare tissue disorder that causes Sullivan to produce faulty collagen, which is essentially the glue that holds the body together, so her joints dislocate often and it affects all her tissues, organs and ligaments.
Sullivan, who is 19 now, deals with chronic pain most of the time, and she’s on several different medications. Her hypermobility associated with EDS also caused her to develop other illnesses, including dysautonomia, a condition that causes the nervous system to not work properly, which makes her pass out often, sometimes during dance class.
Some days are better than others, and she is not permanently bound to her wheelchair, despite what the doctors said would happen. She can walk, and she still dances and teaches classes at Impulse Dance Academy in Greenwood, which is owned by her mother, Kerri Sullivan.
“I used to dance for 20 hours a week. It was my life; it still is,” Kylie Sullivan said.
But flare ups can make her mobility more difficult, and right now, she has to stay in the wheelchair or sit down to keep herself from fainting.
That’s why King felt like she needed to write the letter to Santa asking for help. Her mom, Heather King, showed it to Sullivan before it was mailed to the North Pole.
“I cried a lot,” Sullivan said, tearing up. “It meant a lot to me because the biggest thing I always tell the girls when I’m dancing is that dance is like therapy, and when you can’t talk about things, you can dance about things.”
Since EDS is typically genetic, Sullivan was born with the disorder, but she wasn’t properly diagnosed for 15 years. It was after she spent the first five months of 2017 in the hospital that she was diagnosed.
Throughout that time, Sullivan feared she might not ever get to dance again. She couldn’t picture letting go of this passion that had been her life since she was two years old.
“The only movement I had was in my fingers … I got this feeling of, was I ever going to be able to dance again?” Sullivan said. “The doctors said, ‘You better get a nice powered wheelchair because you’re never going to walk again.’”
The doctors were wrong. Kylie still dances, and she doesn’t plan to stop.
“I get to teach amazing people like Emily, and I get to share my love for dance,” she said.
Kylie has faced bouts of depression throughout her journey with her disability, but she’s grown and found ways to stay uplifted through everything. She started an Instagram account where she posts at least one positive moment of her day, everyday.
“It’s really hard to get in that routine of finding a positive a day, especially when your life is full of doctors’ appointments and medical things. But that Instagram has really helped me.”
She also doesn’t know where she’d be without the support of her family and friends such as Emily King and the rest of the King family.
“For being a mom watching from the outside, when the girls see Ky in her wheelchair, or when she’s in her boot or whatever contraption that’s holding her together, they want to work harder,” Heather King said. “They want to be able to dance for her.”
Although Emily King knows Santa can’t help Sullivan walk again right now, she hopes sharing the letter might help bring awareness to EDS, which could help Sullivan in the future.
For now, her doctors are trying new treatments and medications that could help her get back up to dance again soon.
