Two Florida parents spent much of their 2020 in-home isolation consumed by a mystery: What was wrong with their little girl? When trips to the hospital proved fruitless, the toddler’s mother decided to take matters into her own hands.
Fortunately, she ended up correctly identifying a rare life-threatening disease. Her daughter, finally on the right treatment plan, is now on the road to recovery.
“On Feb. 19, 2020, we were unable to wake our 2-year-old daughter in the morning,” parents of three Maria Garcia and Anthony Patrignani wrote on a GoFundMe page. “[T]errifying as it was, she was breathing and looked so perfect.”
They felt “helpless,” Leilani’s father, Anthony, told WFTS. “[T]here was nothing you could do, and when we got to the hospital, there was literally nothing they could do.”
Leilani according to her mother was “very slow,” “very shaky,” and unable to walk, as she felt that she would lose her balance anytime and fall.
By September, and after more than a dozen trips to the hospital, Maria went online to start conducting her own research from their family home in Plant City, Hillsborough County, Florida. Detailing her daughter’s symptoms, she hit on a possible diagnosis: a rare pancreatic tumor known as an insulinoma.
“I figured it out, I don’t know how, with God’s help,” Maria reflected. Leilani’s doctors agreed that the diligent mom’s diagnosis made sense. Next, they had to locate the tumor.
The family packed their daughter’s favorite toys into the car, and together with Leilani, they headed for Children’s Hospital of Philadelphia for a specialized nuclear scan. “And halfway there, we got a phone call saying we can’t get the approval because of COVID,” said Anthony.
Forced to turn around, the trio drove to Tampa, where Leilani’s condition deteriorated. “Leilani was starting to lose balance,” her parents documented. “[S]he would let us know by saying, ‘Whoooo I’m falling,’ ‘Mommy my tummy hurts,’ ‘Not wanting to eat.’”
The toddler was fitted with a feeding tube at St. Joseph’s Hospital, and her blood glucose was monitored constantly. The exhausted parents started a GoFundMe page to help subsidize their daughter’s mounting medical bills.
After three anxious months, as Leilani’s condition worsened, she was flown to Philadelphia on Dec. 6, 2020, where she underwent more scans and tests. According to updates, a vital surgery that included a procedure to remove 40 percent of her pancreas was performed by surgeon Dr. Scott Adzick on Dec. 23, 2020.
On Jan. 13, 2021, Leilani’s parents updated those who were following her journey that the little girl has started to feel like a toddler and was truly a “Christmas miracle.”
“I’ve only done twenty or so of these operations in children, and she is the youngest one,” Dr. Adzick told WFTS. “She may be the youngest patient ever recorded to have an insulinoma.”
At the time of writing, Leilani is almost six weeks post-surgery and has finished a course of chemotherapy. According to Dr. Adzick, Leilani is going to be just fine.
Anthony, grateful for the surgeon’s intervention, calls his daughter’s journey an “amazing story and an amazing ending.”
“There’s a saying that I use,” Dr. Adzick shared: “‘If you save a child, you save a lifetime,’ and I think that applies to this little girl.”