Kaitlin Gonzales Swanson and her husband Jon told each other that no matter what, her 30th birthday was going to be better than her last.
2016 was set to be the pivotal year in her young life. She was finishing her doctoral degree at Rutgers University in psychology and working full time as a school psychologist at Fisher Middle School, all while planning her upcoming summer wedding.
No one could have anticipated the healthy and active woman would spend her 29th birthday in a hospital bed being tested for ALS and shortly thereafter, given no more than a year to live. To top it off, the diagnosis came with her wedding only about a month away.
Swanson has defied the doctors initial expectations, and on May 6, cut the ribbon for ALS Association Greater Philadelphia Chapter’s Seaside Walk to Defeat ALS in Seaside.
Her fundraising team raised almost $50,000 and hundreds of volunteers—all friends, family, co-workers and acquaintances—were by her side as she walked the boardwalk that day.
“Everyone has been amazing,” Swanson said, “We just feel blessed all the time by the people who support us.”
Amyotrophic Lateral Sclerosis, also known as Lou Gehrig Disease, is a rare, progressive neurological disease that affects nerve cells in the brain and the spinal cord, according the National Institute on Health. There is no cure and most people with ALS live for 2-5 years from the onset of symptoms.
Swanson, a Hamilton resident and native, always lived a healthy and active lifestyle. Running has always been her recreational activity of choice. She grew up running with her parents and siblings and ran in high school. While pursuing her undergraduate degree at the College of William and Mary, she ran a half marathon.
She met Jon, a insurance adjuster with New Jersey Manufacturers, also from Hamilton, four years ago at their church, Pennington First Assembly of God, and they bonded over their faith and active lifestyles.
The would go on runs together and play volleyball all summer long with friends. In the summer 2015, Swanson noticed she wasn’t jumping as high as she used to and would occasionally fall.
“It was kind of funny in the beginning,” she said.
But when the school year started that fall, she says she was standing with a co-worker and lost her balance, falling to the ground. She’d go running, and it felt like her feet weren’t landing properly anymore.
‘I don’t think any of us imagined it would be ALS. It wasn’t something that any of us knew about beforehand.’
In January 2016, she sought treatment from a physical therapist. She said the physical therapist noticed issues with her balance and recommended a neurologist.
During the next six months, she underwent a litany of tests while continuing to work full time at Fisher Middle School and finishing her doctorate. Her balance issues progressed to the point she could no longer run.
“It was upsetting,” she said. “I would get upset when I saw people running because I missed it so much.”
As the months passed, there were still no answers. She was having more trouble walking, falling more often and her speech was slurred.
“We just wanted to know what was going on because the symptoms were scary,” Jon said.
Days before her 29th birthday, she was admitted to Columbia Medical Center in New York. When her test results came back, she was in the room with her parents. Jon was on a train heading to see her. The doctor came in a delivered the news.
“I don’t think any of us imagined it would be ALS,” Jon said. “It wasn’t something that any of us knew about beforehand.”
Swanson also says she didn’t know very much about ALS before the diagnosis.
“When I first heard about [ALS], I thought it was mostly older white men who were veterans and that didn’t fit my profile,” she said.
According the the Center for Disease Control’s (CDC) National ALS Registry, reports suggest between 12,000 and 15,000 individuals are currently living with the disease. A small minority, 5 to 10 percent, account for familial ALS, a genetic link to the disease.
Swanson has what is known as sporadic ALS, meaning she has no family history of the disease. There is no known cause for ALS, and approximately 5,000 people per year are diagnosed with the the disease. The CDC states ALS is slightly more common in men and is an age-related illness, usually occurring in individuals 55-75 years of age. Young people who are diagnosed with the disease tend to live slightly longer, reports the CDC.
After receiving the news from Columbia, Swanson went to John Hopkins University Hospital and on June 20, her diagnosis was again confirmed as ALS. The doctors told her she had a year to live at most.
At the time of her diagnosis, the Swansons were attending pre-marital counseling with Pastor Brian Lane at Pennington First Assembly of God.
“There’s an overwhelming frustration I think when you are dealing with someone so young, 29, getting married and starting a life and then something like this happens,” Lane said.
“It doesn’t feel fair,” he said. “It’s not the way life is supposed to happen.”
The couple didn’t let the diagnosis upend their wedding.
On July 15, 200 people gathered at the Pennington First Assembly of God for the wedding ceremony. In a white gown, Swanson walked down the aisle with the help of her mother and father.
Lane recalls Swanson getting choked up while reciting the vows “in sickness and in health.”
“This wedding really did have the underlining of what the core values of marriage are really about,” Lane said. “In situations and moments like this, it really boils down to the things that are most important in life—the people you have around you, your faith in what you believe comes next, and that you are meant to care for each other and love each other in a difficult time.”
“It’s a lot different than what we thought the first year would be,” Jon said. “They all said the first year would be difficult in the marriage, but for us it’s a lot of different things.”
Kaitlin and Jon planned to buy a house, but since Swanson can’t walk up and down steps, those plans have stalled. While Swanson used to love to cook and bake, her husband is now stepping up in the kitchen.
“I never cooked much or went grocery shopping much, so there’s a lot of things that just weren’t familiar because I never had to do it, but now it’s just things I have to do,” Jon said.
Swanson’s parents live close by, and they say their families and friends have been a tremendous help.
Her father takes her to work in the morning and her brother Liam Gonzales, who also works in the Ewing school district, brings her home in the afternoon.
Swanson admits the disease is upsetting to her, Jon, and their families.
“The big thing with ALS is the terminal part, she said. “Death isn’t particularly scary for me at all. I know where I’ll go. Degenerating is difficult and probably the hardest part is it keeps changing so even though we’re adapting, it will change and we’ll have to adapt again.”
‘We have a lot of people who love us and just the amount of people who are connected to us… it’s unbelievable.’
In ALS, the motor neurons in the brain begin the degenerate and stop sending messages to the muscles. Gradually, the muscles weaken and atrophy, and eventually the brain loses it’s ability to initiate and control voluntary movements, according to the NIH.
Eventually, people with ALS lose their strength and ability to speak, eat, move and breathe.
Last summer, Swanson began to use a walker that was donated by the ALS Greater Association Philadelphia Chapter.
She says that since becoming ill, her friends don’t look at her differently, but she notices the way strangers look at her.
“We say often that the walker makes people feel comfortable staring.” she said.
Initially, Swanson said she didn’t want to do any ALS activities or fundraising, but after a friend at church noticed she was using a walker and didn’t know she had ALS, she realized she had an opportunity.
“I realized unwittingly that maybe I hadn’t been as transparent about what was going on,” she said. “So we decided we wanted to do a walk to kind of explain what was going on and raise awareness and figure out ways that we could help.”
A month and half before the scheduled walk, Swanson made a team page with the ALS Greater Philadelphia Chapter’s Walk to Defeat ALS. Her fundraising goal was set to $2,000 and family and friends spread the word. The Ewing School District also posted information about the walk online. A friend made custom purple t-shirts for the day of the walk.
The response was overwhelming. Swanson’s team, A Cure for Kait, raised $48,800 and over 200 people signed up to participate in the walk. She says the commission called and asked her to cut the ribbon on the day of the event.
It was a sunny day on the boardwalk on May 6, and as participants gathered at the starting line, hundreds of people flanked in purple shirts gathered to watch Swanson cut the ribbon.
“It was a sea of purple,” she said.
Many of her Swanson’s co-workers from the Ewing School District walked with Swanson that day.
Ann Colaizzo, who works with Swanson on the Child Study Team at Fisher Middle school, attended the walk.
Colaizzo said when word of Swanson’s diagnosis spread through the school, it was devastating. The walk gave the district a way to support Swanson.
“It was wonderful,” she said. “She had tons of people on her team. It was very uplifting.”
Lane attended the walk with his wife and many of his parishioners.
“It was cool to see church people, family, friends, co-workers, all these people coming together for support and everybody there was very positive and encouraging,” Lane said.
One year after her initial diagnosis, she is still finding hope and joy from the people around her.
For her 30th birthday, her family and friends threw her a surprise birthday party. They constructed a drive-thru movie theater in the Pennington First Assembly’s parking lot. Swanson, Jon and the 60 attendees watched movies and grilled food.
For their first wedding anniversary, they are planning a trip to Gettysburg, Pennsylvania, and are also planning a trip to Disney World, Swanson’s favorite place, during the summer break.
“It a degenerative, devastating disease, but cognitively nothing really changes, so the most difficult part is you’re kind of inside watching everything change around you,” Swanson said.
The Swansons said they can’t imagine what life would be like without all of the friends and family who are helping them and praying for them.
“We have a lot of people who love us and just the amount of people who are connected to us, praying for us and the support we get, it’s unbelievable,” Jon said.