4-year-old's legacy was pushing frontiers of medicine, Minnesota law

Elisa Rose McCann smiled through her pain.

A touch, a kiss or a cuddle could tear Elisa's fragile skin and raise blisters that hurt like third-degree burns. But she loved, and was dearly loved, every day of her short life.

She died at home in St. Paul on Jan. 12, a few weeks shy of her 5th birthday. In those years, she and her family helped push the frontiers of medical research and Minnesota law.

"How do you deal with pain and still find so much joy in life?" said her father, Dagan McCann, remembering a smiling, gracious little girl with a sassy sense of humor who brought out the best in the people she met. "She could ease our fears and ease our pain with just a simple look — a look in her eyes of 'I'll be OK.' She was very much my teacher and she will continue to be."

Elisa was born in Palermo, Italy, with a rare genetic condition known as recessive dystrophic epidermolysis bullosa. Her body could not produce collagen ­— the glue that knits skin and tissue together. Twisting, swallowing or even blinking can open raw wounds, scarring children inside and out, and shortening their lives.

"Non c'e niente da fare," the Sicilian pediatricians told her parents as blisters erupted all over the newborn's body. "There's nothing that can be done."

But there was nothing Dagan and Gabriella McCann wouldn't do for their youngest child, and they found their "last, best hope" on the other side of the globe; in St. Paul, where Dr. Jakub Tolar and his colleagues were researching an experimental stem cell therapy at the University of Minnesota.

After Tolar made a 5,500-mile house call to see Elisa in Palermo, Gabriella McCann turned to her husband.

"Pack it up, honey," she said. "We're moving to Minnesota."

The family moved to St. Paul in 2014 and enrolled 1-year-old Elisa in Tolar's clinical trial. She underwent chemotherapy, radiation and a bone-marrow transplant, donated by her sister Stella. The procedure eased the disease's progress. Within a year, Elisa could walk without blistering her feet. But it was a treatment, not a miracle cure.

The miracle of Elisa, her father said, was her ability to "live with grace and a kind spirit in the face of death."

Pope Francis named her a pontifical hero. Rock star Eddie Vedder visited her in the hospital. Kyle Rudolph of the Vikings took her to see Santa. She made the front page of the newspaper when Minnesota was debating whether to allow pain patients into its medical marijuana program. In 2016, state law changed to accommodate patients like Elisa.

Elisa loved taking walks around her Cathedral Hill neighborhood, riding her bike fast and sledding. She was a fan of Play-Doh, Taylor Swift, the Grateful Dead and drinking ice water poolside at the University Club of St. Paul. She could play "Twinkle Twinkle Little Star" on the ukulele.

She started school last spring, attending Benjamin Mays in St. Paul when she was able, and was a dedicated "student" on her iPad when she had to stay home.

She loved the smell of food, even though she couldn't eat it, and she enjoyed smelling and grinding fresh-roasted coffee.

"The pain I felt in my heart every day was just it breaking and expanding and making room for all the love I felt for her," her father said.

Elisa is survived by her parents and sisters Greta and Stella. Memorial contributions can be directed to Tolar's research into a cure for EB at elisamccann.com.

Jennifer Brooks • 202-662-7452