One thing Jackie Celske said she has learned during a long, painful healthcare journey is that there’s healing strength in the power of a community of caring people. Ms. Celske is the Augustana College alumna whose fight against a debilitating autoimmune disorder has galvanized Quad Citians to raise $40,000 and counting to help her pay […]
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One thing Jackie Celske said she has learned during a long, painful healthcare journey is that there’s healing strength in the power of a community of caring people.
Ms. Celske is the Augustana College alumna whose fight against a debilitating autoimmune disorder has galvanized Quad Citians to raise $40,000 and counting to help her pay for about $140,000 in experimental treatments that are not covered by health insurance.
“The quote by Mark Hyman — ‘The power of community to create health is far greater than any physician, clinic or hospital’ — is what comes to mind,” Ms. Celske told the QCBJ.
“The small acts of kindness of several individual people, everything from silent prayers and simple smiles as we pass to generous financial gifts and physically carrying me at my weakest, have all contributed to my well-being and healing,” she said. “The power of this story goes so much deeper than just highlighting the money raised — it’s the humility and selflessness of thousands of people who recognize the positive waves we can collectively make in the world, but we have to do it together.”
That story is older than the current fundraising effort for Ms. Celske, who grew up in London, England, and moved to Aledo, Illinois, at age 12. After high school graduation, she went to Augustana in Rock Island to stay close to home so she could deal with her worsening health.
“I had three of my major surgeries during my time at Augie, and being a small school they worked with me to customize my class schedule and work with my professors so that I could still graduate on time,” she said. “One of my professors even met up with me a few times at the hospital in Iowa City to teach me statistics.”
After graduation, she moved to Naperville, Illinois, but had to quit her job and move home to seek new treatment options. While here, she said, she “realized how fortunate I was to be in a community that was close to a lot of great medical resources but that allowed me to have a calmer life and more flexible career. I knew after completing my master’s degree from Johns Hopkins — which I did online while exploring medical treatment — that I wanted to stay here and invest back into the community that had already — and continues to — give me so much.”
That includes $30,000 raised so far via a Go Fund Me campaign launched by her sister, Jessica Andress. “If you have had the privilege of knowing her personally, you know how hard it is for her to ask for help when she needs it,” her sister said. “She has given so much of herself to her family, friends and community over the years — now it’s our turn to give back to her.”
The community has done so ever since learning of Ms. Celske’s condition which Ms. Andress said has not only “debilitated her and robbed her of the life she deserves, but the mental toll of advocating for herself alone, missing out on opportunities and the financial stress of medical bills continue to weigh heavily on her and those who love her.”
These days Ms. Celske is celebrating progress on all fronts. “It took an entire village (literally!) to get me to this point, but it has been so worth it!” Ms. Celske wrote in a Go Fund Me update Sept. 12 after receiving the first of what she called “life-saving immunotherapy treatment” at the Maharaj Institute of Regenerative Medicine in Florida.
She told the QCBJ that two months after treatment began, she felt so well that she was able to return to work full-time as the new director of public relations and strategic communications at St. Ambrose University. “I’ve now been at St. Ambrose for a month and a half and I definitely feel like all of these things needed to happen in order for me to end up in this place in what feels like the perfect job for me,” she said.
The destination, however, did not make the journey any less difficult. “For 16-plus years I’ve had daily pain and unpredictable symptoms that affected the autonomic functions of my brain and body,” Ms. Ceske said.
She originally was diagnosed with “Immune Senescence,” which is not really a disease but rather a description of her symptoms. “It means that the ratios of the cells my immune system needs to function were presenting as if I’m 80-90 years old and made me much more susceptible to disease and illness,” she said.
Among other things, the condition caused her to become allergic to her own bladder and develop crippling nerve pain and a heart condition because the organ was working too hard to keep her body alive. She underwent eight surgeries and had a neurostimulator put on her spinal cord.
In desperation, she did a Google search for doctors who specialize in bladder removal.
Then in what, she said, “can only be described as a miracle,” she found Dr. Dipnarine Maharaj.
“I came across an article he posted that was a case study of one of his patients, read the medical journal study, and just cold called his office. His patient relationship manager let me cry on the phone and made me feel like she believed me, so she got me in that week to see him.”
She later quit a job she loved at MindFire Communications in LeClaire, left the Quad Cities and moved to Florida to begin the first rounds of treatment in August.
At least two more rounds will be necessary. That is if Ms. Celske can pay in advance for the daily infusions of a low-dose chemo medication and injections of her body’s natural substances to help regenerate cellular activity.
To help pay for them, the community has stepped in to help. Local business heroes include the Iconic Event and Reception Venue, 1725 2nd Ave, and Arts Alley, Rock Island; Front Street Brewery, 208 E. River Drive, Davenport; and Buttercupp Candles, 3201 Avenue of the Cities, Moline.
“The beautiful part of this story is that I have a drastically different connection to each person, or with some no connection at all, but my relationship with these businesses was not what mattered — the fact that I am a fellow Quad Citizen was enough for them to step up to help,” Ms. Celske said.
That includes Dave Phillips, owner of Iconic Martini, which operates the Iconic Event & Reception Venue. Mr. Phillips and Ms. Celske “didn’t know each other personally but he knew I was an Augie grad and that I’ve visited his Icons Martini bar many times since being a resident of Rock Island back in the day,” Ms. Celske said.
Yet, he quickly offered his busy event space for free so Ms. Celske’s friends could stage a successful Green Bay Packer-themed Hail Mary Event benefit. He also recruited volunteers to bartend and serve at a taco bar, and donated all of the proceeds from the tacos as well as auction baskets.
“One of his volunteers, whom I had never met, came up to me during the event after hearing my story, hugged me and broke down crying,” she said.”It was incredible to know that so many people were willing to work at an event for free for someone they knew nothing about, and many of his employees/volunteers actively donated through the auction and raffle that evening as well.”
Then there was Front Street’s Marketing Director Brandon Mavis, a friend of Ms. Celske’s who worked with her years ago at the HON Company. Mr. Mavis, whose Front Street’ Facebook page called Ms. Celske a “devoted Quad Citizen and overall awesome person,” brewed up the idea for Front Street’s “Jackie’s Hail Mary IPA.” The business donated $1 from each pint poured in the days leading up to the Hail Mary benefit. The brew raised $380.
At Buttercupp Candles, owners KC and Jennifer Cupp donated 30% of candle sales for two weeks to her fund. Ms. Cupp designed the Green Bay Packer inspired candle wrap so customers had the option to purchase any of their scents in a “Jackie’s Hail Mary” candleholder.
In all, she estimates some 100 QC businesses — including her former employer MindFire Communications — have stepped up to help her complete her healthcare Hail Mary.
MindFire, for example, allowed her to relocate to Florida and work remotely as she was contemplating her next steps. “They gifted me extra PTO hours and the flexibility I needed to attend doctor appointments, rest, and just process what was happening,” she said. “I know they would have worked with me to let me stay throughout all of this, but I ultimately felt like my medical needs were getting in the way of their work and ultimately their ability to serve their clients which is what led me to make the difficult decision to resign. They allowed me to prioritize myself over work, which I will forever be grateful for.”
These days, Quad Cities friends remain focused on raising the $65,000 that Ms. Celske hopes will be enough to complete her treatment.
To help Ms. Celske on her journey and donate to the cause, visit the Go Fund Me page called Jackie Celske’s Medical Treatment Expenses.
