by Bruce Dunbridge
DENVER – Jessica Nicole Link, daughter of Verdict Ridge residents Helen and Robby Link, was diagnosed with the debilitating genetic disease cystic fibrosis when she was just two days old.
After two weeks in the neo-natal intensive care unit, baby Jessica went home, and so began a life which, although destined to be cut short by this incurable disease, nevertheless left a lasting legacy which may very well transform the lives of others with cystic fibrosis in ways Jessica, who died last year, did not live to see.
Considered a rare disease, affecting just 30,000 patients in the United States, cystic fibrosis is caused by a defective gene, resulting in a buildup of thick mucus in the lungs and digestive system. Symptoms can be treated, but worsen considerably as the patient ages, with treatments becoming more and more frequent.
Two-week hospital stays several times a year become the norm, and eventually, a lung transplant becomes the only viable option for prolonging life. However, because of the unique complications in the course of her disease, Jessica was not eligible for a transplant.
Her parents made the decision early on that they were going to “raise her as a kid, not a CF kid.” Her dad remembers her as “a typical young girl who loved running and playing,” in spite of the debilitating treatments she required as she got older.
“Everywhere she went, she engaged people,” Helen Link said. “(She had) an extensive online presence, learning about other CF sufferers whose situation was often worse than her own.”
She started a blog she called ChroniCuriosity, providing a vehicle for her observations and reflections on her unfolding life experience. To explain the rationale for her ramblings, she quoted Mary Oliver: “Pay Attention. Be Astonished. Tell About It.”
“She loved to argue and debate, always asking, ‘Why?’” her dad said. “And she had a tremendous intellectual curiosity. She was the queen of the run-on thought.”
Jessica attended SouthLake Christian Academy in Huntersville and then North Mecklenburg High School. She graduated cum laude (with honors) from the University of North Carolina at Charlotte, with a degree in political science. “
Those who knew her best described her as spunky, brilliant, funny as hell,” Robby Link said.
Despite her own struggles with difficult and increasingly frequent treatments, she maintained a keen interest in the lives of other cystic fibrosis patients online. In 2011, she learned about a young couple, both with cystic fibrosis, who got married.
After his wife died, the husband’s grief was compounded by his inability to work. Jessica, who had spoken at various fundraisers – “She was a very eloquent speaker,” Helen Link said – was struck by the lack of support the young husband received.
She decided then to create a foundation to help other patients with the disease, providing emotional and financial support.
“This disease is expensive and all-consuming,” Jessica wrote, “and it wreaks havoc on the family.”
The name of the organization, she decided, would be Spiritus, Latin for “breath” or “spirit.”
She died in January 2015, and at the celebration of her life following her passing, her parents remembered her as their inspiration.
“Jessica had two wishes for those who might feel inspired to act upon her passing,” her parents said. “First, become an organ donor, and second, be on the lookout for information on the Spiritus Project.”
They have fulfilled Jessica’s wish by establishing the Spiritus Project in her memory.
A Spiritus Project fundraiser, the 2016 Spirited Masters Golf Tournament, will be held April 11 at the Verdict Ridge Golf and Country Club. Information can be found at spiritedmasters.org.
Bruce Dunbridge welcomes story ideas. Contact him at firstname.lastname@example.org.