A bright smile, a love of storybooks, and the strength to fight back against cancer: These are memories that one family with local ties will always have of their late 7-year-old son whose legacy lives on through a charity they founded in his honor.
On what would have been Pierce Delger’s 12th birthday Feb. 28 his family and members of their volunteer organization, Pierce the Darkness, are holding a special fundraiser.
Pierce’s parents, Brad and Jessica Delger, are working to help families moving through challenges similar to the ones that life confronted them with.
Jessica Delger said Pierce “inspired us to keep moving, to keep pushing, and to keep persevering until we make a difference in other kids’ lives on his behalf. “From birth, he completed our family.”
Pierce smiled through the many hardships that life had in store for him, his parents said.
When Pierce’s mom or dad would open one of his favorite books, like Brown Bear, Brown Bear, What Do You See? or Little Blue Truck, they didn’t just know the tale awaiting them on the familiar pages. They could also count on the possibility of Pierce taking over the narration — regardless of whether the book was in his view, they recall.
“It is hard to explain all that he endured in his young life in a concise way,” says his mom Jessica, a Platteville native whose family has deep roots in the community. She is the daughter of Eileen Wilson Engelke, and Gary Englke, the founder of Platteville’s former HomeTowne Bakery. “It is even more difficult to understand how he remained resilient through so many trials.”
In the midst of the COVID-19 pandemic the Delger family received the heartbreaking news that forever changed their lives. In July 2020, Pierce got diagnosed with a cancerous, fast-growing tumor in his brain — a Medulloblastoma, which caused him to lose his vision, Jessica said.
After the diagnosis, in a timeframe of less than four months, Pierce was in four different in-patient hospitals, and “every time he changed hospitals he had to undergo a COVID test from a person he couldn’t see,” said Jessica. “Every single person who entered our room was faceless to him — they were a voice, a footfall, a scent, a change in the air — and he had to wear a mask for them all.
“His brothers and other family could not visit him, and he could not go in the halls or play areas to meet or play with other children also in the hospital at that time.”
And following a 12-hour surgery to remove the bulk of the tumor from his brain, he suffered from a condition that Jessica said left him unable to “move any part of his body beyond his head from side-to-side.”
“He could not speak or even swallow,” she added. “He had to re-learn every single skill that had already been a challenge for him to learn because of his [autism spectrum disorder] ASD diagnosis” before turning 3 years old.
Throughout his seven years of life, along with undergoing surgery, Pierce also went through chemotherapy, proton radiation therapy, occupational therapy, speech therapy and more, Jessica said.
Despite all the obstacles, “He was jovial, easy going, sweet and always telling us how he loved us,” his mom recalls.
One touching moment Jessica remembers fondly happened when Pierce was getting a chemotherapy infusion at the clinic. She was reading out the words of a story, perched on the hospital bed beside him.
Pierce had by then lost his vision, but “he reached to feel my face, put his hands on my cheeks and said, ‘So sweet mama,’” said Jessica. “It was such a tender moment, and so unscripted.”
Pierce’s father Brad also holds many fond recollections of reading with his son near and dear to his heart. He will never forget how his son could easily recite a favorite book of his, “by memory, word-for-word, all by himself” — even in the face of the speech challenges that he experienced.
“He always had a knack of amazing us, even in everyday moments,” said Jessica.
In honor of the love and light that Pierce brought to the world, Jessica and Brad started a volunteer organization called Pierce the Darkness to raise funds for organizations that research vision loss, as well as those that offer services and support to families of children with visual impairments, said Brad.
The charity’s board of volunteers meets monthly, and they are preparing for an upcoming Winter Social fundraising event Feb. 28, which would have been Pierce’s 12th birthday. It’s scheduled to take place at Pryes Brewing Co. in Minneapolis from 7 to 10 p.m.
Along with making contributions to entities such as an eye institute and children’s hospital, “Another of our goals is to provide direct grants to families with children with visual impairments that they can then use to improve their child’s quality of life,” said Jessica. “Research takes decades, and these children have immediate needs we hope to help meet.”
The charity accepts monetary donations and silent auction item/prize donations, as well as contributions of “time, talent, and influence,” said Brad, noting that they welcome anyone willing to volunteer to reach out.
“Connections and word of mouth are integral to helping our charity grow and have longevity,” he added. “Aiding us in making connections with families of children with visual impairments, telling others about what we are doing and helping us grow our reach are all actions we need and appreciate.”
They are pushing on with these efforts in memory of Pierce, who Jessica described as, “a gift to our family.”
Those who wish to learn more about contributing to ‘Pierce the Darkness’ can visit www.piercethedarkness.org or contact Pierce’s great aunt, Maxine Lane, msmacy105@yahoo.com, 608-778-7786.
