Worn out from a two and a half hour cheer practice, freshman Keyli Kamin steps out of her mom’s Jeep. She and her mom walk up the front porch steps into their mocha-colored front room. Tossing her bag aside, she glances at her younger sister Jaedyn, whose eyes are glued to Mickey Mouse on the T.V. screen. With a quick “hi,” Keyli walks past her and is off to her room. No rushing to the hospital to stop the vomiting. No quick thirty-minute surgeries turning into six hour ones. Things are normal tonight.
Normal means something different to Keyli. It means a break from the worrying about how her sister’s latest surgery will go. It means a night at home knowing her sister is nearby, not in a bed at Cincinnati Children’s Hospital. Keyli’s definition of normal changed when Jaedyn was born with a condition so rare that none of her doctor had ever seen it before. Taking on the nickname “Jaedyn syndrome,” the doctor’s diagnosis took up half a page: abnormal tracheal rings, a cleft palette, an extra thumb, spinal stenosis, and a kidney located in her shoulder were just a few of the conditions.
Jaedyn had her first surgery at six-months-old in order to correct some of these problems. The doctors soon realized they had no idea what they were getting into. They were overwhelmed by her complications and almost lost her. The Kamin family brought Jaedyn back again two months later for what was supposed to be a quick 30 minute surgery. Thirty minutes turned into six hours. Once again, the doctors were surprised by the oddity of her condition and were at a loss for a solution.
“ . . . They told us there is nothing they could do,” Keyli and Jaedyn’s father Jason Kamin said. “Basically we were just going to have to take her home to watch her suffocate.”
Jaedyn was born with 16 completely round tracheal rings, whereas normally these rings are horse-shoe shaped. As the rest of her body grew, the rings could not. The first couple months of her life, in order to conserve energy, she didn’t do anything besides eat and sleep. They fed her the bare minimum amount of food necessary to survive, but not too much so that she wouldn’t outgrow her tracheal rings.
“It was like [she was] breathing through something the size of a stir straw,” Jason said. “They were shocked that she made it that long.”
With the grave diagnosis that faced the Kamin family, they scrambled for another opinion. Many phone calls later, they discovered that the Cincinnati Children’s Hospital specialized in airways and would be able to help. The only problem was the hospital was located 600 miles away from home.
Despite the distance, the family has made numerous treks to Cincinnati to consult with the doctors. These trips have thrown loops in their routine. This summer Keyli went along with her family to one of these visits. Twelve-hour long days in hospital waiting rooms. Only one small T.V. for entertainment. It was a long and grueling three weeks.
“I read the entire Twilight series in that time,” Keyli said. “I went because it was summertime, but I was not expecting to be there for three weeks.”
Even outside of these trips, a substantial amount of Keyli’s life is centered on Jaedyn. Because Jaedyn is unable to eat regular food, she must be fed through a G-tube, a device which inserts food directly to her stomach. She must be fed four times a day and the feedings last an hour and a half each. An added difficulty to this is her condition of cyclic vomiting. They must time the feedings exactly right so that her stomach won’t react badly to the food. Once the vomiting became so bad that they had to knock her out with a shot for 24 hours.
“[Before Jaedyn came] We did a lot more,” Keyli said. “When she came we had to plan around her feeding schedule, because she can’t go places.”
Despite these physical deformities, Jaedyn still displays a spunky demeanor. One moment she will be pressing the refrigerator buttons spewing water about the kitchen, and the next she will getting into the kitchen tupperware.
“My Dad will tell her no and she’ll just laugh,” Keyli said. “Then she’ll just come back and do it again.”
But it’s impossible to be mad at her. Just seeing her three-year-old grin is enough to take away any anger Keyli might feel.
“The best part is that with all she has had to endure, we can see her giggle and see her smile,” Jason said.
Jaedyn’s resilience is what impresses Keyli the most. Keyli recounts Jaedyn’s first day of school as a moment that defined how she thought about her sister.
“On her first day of school she was running and face planted on the concrete,” Keyli said. “She was crying for like 30 seconds and then laughing again. The teachers were freaking out and getting her ice, but she was fine.”
Whereas younger sisters typically look up to their older ones, Keyli has often taken inspiration from Jaedyn, a three-year-old who can’t even talk.
“I now try to take more risks because life is so short,” Keyli said. “When I am at cheer and I don’t want to throw my tumbling or something, I’m like well I should throw it.”
Through all of these sacrifices, Keyli tries her best to appreciate her sister for who she is. She chooses not to dwell on the challenges or question why Jaedyn was dealt this unfair hand. She focuses on enjoying the time that she gets to spend with her; whether it be on walks or jumping on her moon bounce together. Although Jaedyn is unable to talk, Keyli and her have developed a system of communicating.
“She gets things, she just doesn’t say it,” Keyli said. “When she wants to rock she lifts herself up. You normally have to show her things.”
Although it may be an unconventional relationship, they have found a way to make it work.
“Sometimes I think yeah I wish she was normal, but then I realize that I should just be happy with what I have,” Keyli said. “It’s much better to have her like this than to not have her at all.”
As for the future, the doctors and family are unsure of what will come.
The next big surgery that Jaedyn will have to face is one for her spinal stenosis, which if not fix could possibly cause permanent paralysis
“It seems like once we’ve got a handle on things, another thing will pop up,” Jason said.
For now, the Kamin family is just focusing on taking it one day at a time.
“I don’t think about the future much, I just think about what is happening right now,” Keyli said. “I really wish she could talk and eat, but you gotta just take tiny steps.”