By Helen Lucas
Assistant Managing Editor
Kendra Cerce was just 18 months old when she had her first episode.
“[As a child] they told me I had epilepsy, diabetes, fatty oxidation disorder – everything under the sun they could diagnose me with, they did.”
It wasn’t until when Cerce was nine years old where she was diagnosed with cyclical vomiting syndrome, or CVS. At the time only two percent of the world, or one in every 100,000 had this disease.
When Cerce chose to come to Springfield to study education/american studies she knew it would be hard leaving her family. College can be tough for anyone, especially for someone who is fighting a chronic illness while trying to be a student athlete, but swimming for Springfield is where Cerce met Zack Wahl. Wahl, who was one of the assistants coaches for the Pride, helped Cerce through her first two seasons.
“He made sure I wasn’t a body on the team and that I wasn’t looked at as the girl with the chronic illnesses,” said Cerce. “He looked at me as Kendra, and when I asked him to look at me for the girl with the chronic illnesses, and to help me with that, he was my first person [who was] there.”
When Cerce joined the team, she didn’t tell anyone about her chronic illness for the first month and a half, but after she met with the coaches, Wahl told her about his struggles that kept in from competing in his first collegiate season.
“[In] my freshman year, they wouldn’t allow me to compete because I have a heart condition that I was born with,” Wahl said. “She told us about all the hardships she had and I immediately felt like I could help her in some way because I had also been in the unique situation where I had doctors tell me that they didn’t want me to compete as a swimmer.”
“He made sure I wasn’t a body on the team … that I wasn’t looked at as the girl with the chronic illness. He looked at me as Kendra…” – Kendra Cerce on Zack Wahl
For two seasons, and to this day the assistant coach is Cerce’s go to person.
Cerce hadn’t had a person outside of her family support her like Wahl was. While growing up the education/american studies major went from misdiagnosis to misdiagnosis until finally being diagnosed with CVS.
“It finally seemed like we had treatment plans and options. It was almost a relief for us,” said Cerce. “Getting diagnosed with something is never a good thing but when you’re not diagnosed with anything it’s almost like you want to be diagnosed.”
When Cerce was young, the doctors at Boston Children’s Hospital thought she had a bad wave of the stomach bug. When her parents started charting the sickness and noticed that every 80 days, she would be sick for five straight days. There is no way it could have been a coincidence.
“[It was] basically a week of nausea and pain [build up]. I would have trouble seeing and balancing and it would be one day of ‘the big episode’ or the big break, and I would go anywhere from six to 20 hours of vomiting, migraines and these seizure like things,” Cerce said.
In between those 80 days Cerce lived a completely normal life, her friends unaware that anything was wrong.
Cerce and her doctors tried all kinds of remedies, everything from migraine medication to chemo nausea meds. None of them worked. Then when she turned 12, she stopped going to the hospitals, and all treatments, up she was 14.
“She is literally the toughest human you will ever meet in your life. She’s dealt with more things than most people have in [a 21 year lifetime].” – Zack Wahl on Kendra Cerce
“I stopped everything. I guess you could say [I] gave up because there was nothing anyone could do for me anymore,” Cerce said. “Then we decided to try again because things were starting to get a little worse and the episodes were starting to get more severe.”
At the end of her junior year of high school the doctors started to find success with the medications. While they couldn’t stop all the symptoms, there were no big episodes. Her family and doctors celebrated. The success was short lived.
“When I was a freshman in college I started to have syncope spells [or] fainting spells,” Cerce said. “I was passing out all the time, I was having trouble seeing and walking and my migraines were out of control.”
During her first two seasons on the team Wahl continued to support Cerce. He was her person.
“She is literally the toughest human you will ever meet in your life. She’s dealt with more things than most people will in a [21 year lifetime] and it’s crazy to hear her stories and her positive attitude that she brings [with] it,” said Wahl. “It’s an inspiration.”
After her sophomore season, Wahl left the team to coach at SUNY Geneseo. Cerce needed to find someone new to help her.
“Sometimes you need to look outside pills and IV’s and tradition, and with Zack leaving I needed something else,” Cerce said.
After talking with one of her friends who has cystic fibrosis Cerce decided to get a service dog.
Cerce’s parents were hesitant of the idea. Traditionally, most service dogs are trained by the person the dog will be working with and a trainer. The education/American studies major and her parents knew that she wouldn’t have time to train a dog while juggling school work and health.
After doing more research, Cerce found a program that matched her with a service dog that would be trained to fit her lifestyle, but once Cerce thought she found a solution, she ran into another problem. The cost.
Most service dogs can cost anywhere between $30,000 to $50,000 dollars. After hearing this many of Cerce’s friends suggest to post on GoFundMe, a popular fundraising website. Cerce was unsure if this was the right option for her.
“For a lot of people this would have been a pretty easy choice. For me, I have never told my story until I got to college,” said Cerce. “I don’t tell it often, none of my high school friends even knew.”
Cerce went back and forth debating whether or not to post her story, and after two weeks she decided to do it.
“I did probably the hardest thing I will ever have to do and I sent it out on the Internet for everybody to read. I was overwhelmed by the response, the amount of love and positivity I got from that.”
After just one hour she had already raised $2,000, and by midnight she raised $6,000, which is the downpayment for a service dog. By the end of just one week, Cerce had raised over $12,000. At that point, the swimmer was able to pick out a black labradoodle named Chase, who would begin training for the next 13 months to be able to fit her lifestyle.
Not only does Chase help Cerce with mobility work when she can’t see or balance, but he will also be able to detect low blood sugars. Cerce can tell when she is going to have a seizure up to 30 seconds to a minute before they happen, but now on top of detecting low blood sugar, Chase can detect a seizure up to 15 minutes prior to it happening.
“To be able to have 15 minutes before I have a seizure is incredible, I’m not going to have to run out of class or run out of a store. I can actually breathe and relax and live my life not being terrified of the next one,” Cerce said.
Chase will also be able to help Cerce by performing depressure therapy.
“After I have the seizure I have trouble feeling where the ground is, where up is where down is, I’m very off balance so he’s going to be able to help my body recenter itself by performing pressure therapy and lay on top of me to make sure I’m okay.”
The labordoodle just recently started working with Cerce, and he couldn’t have come soon enough. Since the start of her sophomore year of college Cerce’s seizures have become worse. On top of the CVS she now has epilepsy as well.
“My episodes went from five days with one bad day to three weeks where it’s like a bell curve. I start the first week, the second week is the peak week so instead of one bad day it’s three four sometimes five it it’s a bad episode, then I’ll go back down the third week.”
From all the seizures Cerce has also acquired Long QT Syndrome which can cause arrhythmias, or problems with the rhythm or rate of your heartbeat. The epilepsy is from the electricity in her brain. The electrons start firing to much which will lead to seizures. When she is given medication to slow down the electricity in the brain, it will slow down the electricity in the heart. Cerce can’t add many of the medications she needs because it could lead to a severe heart problem.
“You never really know how tough you have to be until you’re kind of staring death in the face, and when you make it through something like that you have a respect for yourself.” – Kendra Cerce
“We are trying to figure out a different way to balance, but it’s tricky you’re playing a dangerous game, you’re messing with the brain and the heart which are two of your most vital organs,” Cerce said.
CVS doesn’t allow Cerce to eat or sleep. Over a span of three weeks she used to lose anywhere from 15 to 20 pounds. CVS has caused Cerce to have gastroparesis, which is where her stomach turns off during those weeks and she can’t take in any food or water, which forces her to go to the hospitality to get IV nutrition.
“Over the past year I think I’ve really embrace them, seen the good the bad and the ugly and there is a lot of ugly with chronic illnesses, but they also make you who you are and as much as I hate living with them every single day I’m going to get incredible experiences, a different view on life,” said Cerce.
While the swimmer is only 21 years old, Cerce has impacted so many people in her lifetime.
“As a coach it helped me just learn that there’s more than just athletics in life. You can have so much more of an impact on student athletes than if they get faster as a swimmer, if they win NEWMACs, if the win nationals, because the amount I’ve seen her grow is really what it’s all about as a coach,” Wahl said.
Wahl has watched Cerce become more independent as a person. In the few years he has known her, he has gotten to watch her grow and become more confident in telling her story.
“You never really know how tough you have to be until you’re kind of staring death in the face, and when you make it through something like that you have a respect for yourself,” Cerce said. “I think that as hard as it’s going to be to walk around with Chase because I am going to be standing out and different, [but] I think it will all be worth it at the end of the day. He’s going to be incredible.”