As Gianna Masciantonio skipped along the curvy, flower-lined paths that wend through the vast complex of buildings that comprise the campus of Children’s Hospital of Philadelphia, onlookers couldn’t help but admire the sweet, seemingly carefree child. Holding hands with her father, Joey, mother, Kristen, and sometimes even trying to tickle her big brother, Dominic, Gianna’s soft chestnut braids bobbed in the breeze as she chatted to them all.
Inside the sun-filled lobby of the Colket Translational Research Building Aug. 17, an assembly of people joined the Masciantonio family to celebrate their gift of $50,000 from their For the Love of Grace Foundation (Grace is Gianna’s middle name) to fund research for the advancement of cures for rare diseases.
“We are so grateful to the doctors and staff at CHOP for what they did for Gianna, and we don’t want other families in this heartbreaking situation to have to go through what we did,” Kristen said. Joey added that “every penny that comes into the foundation goes out to help other children.”
Kristen explained that the family started the foundation because they “wanted to help with brain tumor and rare disease research, so one day families — especially innocent children — don’t have to go through the indescribable pain and heartache we did. We want to give back to the doctors who saved Gianna’s life. We want to help families financially and spiritually through their battle. We send ‘Sorrow Rosary’ beads to families in need, along with a special prayer that brought us personal and comforting peace. For years, we have been saying the Rosary on a prayer line every Tuesday night from 9 p.m. to 10 p.m., and our intention list has grown to three pages, while our prayer warriors now includes over 50 people each night. Isn’t that amazing?”
If everyone seemed cheerful and happy to be in attendance at the ceremony, the moment was a far cry from the years the family had spent at the hospital wondering if their precious baby girl would survive the excruciating ordeals that shrouded her young life.
After failing a newborn hearing test that is mandatory in all U.S. hospitals, a subsequent MRI at The Children’s Hospital of Philadelphia revealed that the baby had a rare and massive tumor wrapped around her brain stem.
The virtually hopeless prognosis left the family stunned and the experts in virtually all the top pediatric hospitals scrambling to help.
At 4 months old, Gianna underwent her first of many surgeries, a grueling 10-hour craniotomy performed by the chief of neurosurgery, Dr. Phillip Storm, who removed tissue for a biopsy and drained the cysts that were growing around the tumor. That procedure, and many more, resulted in a dramatic reversal of the initial diagnosis of cancer, when the doctors informed the family that Gianna had a rare blood disorder called Juvenile Xanthogranuloma (JXG) that affects 1 in 10 million children.
The new diagnosis ushered in a course of intense chemotherapy and bimonthly MRIs to monitor the efficacy of the treatment, which turned out to be very minimal. “But we never lost hope,” Kristen said. “We felt God was with us every step of the way. And that’s the only reason we were able to carry on the way we did.”
However, the treatments did compromise Gianna’s immune system and the family was cautioned about taking her into crowds. So when Kristen learned about the Pope’s visit to Philadelphia in 2015, she asked Dr. Amish Shah, Gianna’s neuro-oncologist, if they could take the then-1-year-old to the event.
“I told them to go for it,” the soft-spoken physician recalled to the Register. “I could not see how it could hurt her.”
On that momentous day, Pope Francis noticed Joey holding the baby high in the air and ordered the popemobile to stop. As he blessed and kissed her, the resultant photos and story of the Catholic family spun around the world.
Remarkably, a month later, the MRI showed an enormous change in the tumor. “We were hardly seeing it at all. It was like a haze over a sunset,” recalled Shah. “The cysts which were still there were shrinking more dramatically than ever.”
Although the family rejoices in their child’s daily progress, they balance their enthusiasm with gratitude for their extraordinary blessings and admiration for everyone who participated in Gianna’s care at the hospital.
“Neither Joey nor I believe the kiss cured Gianna,” emphasized Kristen. “It merely gave us much more faith to keep fighting. The fact is that she had had seven months of intense chemo before the kiss. The encounter with the Holy Father filled us with more strength and faith to fight on.”
After the presentation of their donation to the hospital, Kristen appeared to be caught up in an aura of peaceful joy. “She is an amazing child,” she remarked, as everyone watched Gianna chasing Dominic through the lobby of the building. “It’s hard to believe that she will be 4 years old on Sept. 17. Besides spending eight months in hospice care, she’s had 18 surgeries, 15 months of intensive chemo, 80 Hyperbaric Oxygen treatments, as well as countless scans and blood draws. That’s a lot for a 4-year-old to have endured.”
“She’s so smart and personable and works so hard in therapies every day because the left side of her body and right side of her head were affected. But she’s walking, jumping, talking a ton, hearing and feeding herself,” her mother told the Register. “She’s really working on using her left hand now and even learning to ride a pony. Her therapists are amazing, and she loves her wonderful ophthalmologist, Dr. Gil Binenbaum, whom she meets for her vision evaluations every two months. She also recently started facial movement therapy to help her smile and use the right side of her face. It’s all slowly coming together, yet each day we realize we could not get through this without God in our lives.”
Kristen says the family is solidly grounded with the knowledge that their journey is not over. “Each day,” she said, “we put our trust in the Lord.”
Marion Laffey Fox writes from Philadelphia.