In the past decade, Heidi Berger Manoguerra has become quite adept at conversing in medical terms.
The Ahwatukee resident of 12 years isn’t a physician or a med student, but the mother of 18-year-old Kathleen Kayley Maro has learned about a plethora of illnesses and diseases since her daughter was diagnosed with pancreatitis at age 10.
“Over the years, I’ve been told time and again that the pancreatitis was idiopathic, the worried mother wrote on her GoFundMe account last month. “Nonetheless, every year since, I have requested imaging studies and lab work. Idiopathic didn’t sit well with me.”
Idiopathic refers to any disease or condition arising spontaneously, or one for which the cause is unknown.
What prompted the establishment of the GoFundMe account – which has reached more than half of its modest $5,000 goal – was the latest diagnosis in mid-December at Boston’s Massachusetts General Hospital, often referred to as Harvard/Mass because it is the largest teaching hospital of Harvard Medical School.
The account’s donations were initially earmarked for travel costs – but now a denial of coverage by the family’s healthcare insurance provider has worsened Maro’s plight. The family estimates treatment alone could run $22,000 a month.
Mom, stepfather Mark and their daughter met with Dr. John H. Stone, director of clinical rheumatology at the hospital and professor of medicine at Harvard Medical School.
That physician’s research group also has broadened knowledge of IgG4-RD, “a condition unknown in the U.S. before Dr. Stone’s work,” a Harvard website states, adding that he is recognized as the world’s leading investigator in this disease.
Manoguerra, currently a fifth-grade social studies teacher at Chandler’s Dr. Howard K. Conley Elementary and a former charter school principal, did meticulous research before deciding Stone was the best physician to determine what treatment they should pursue for their daughter.
“We flew her out to see him on Dec. 14, and he confirmed the diagnoses. There is a treatment available, but we will need to fly to Boston at least two more times for it. From there, they’ll check her labs and determine when we need to go again,” said Manoguerra, adding:
“This is really a life or death issue. If she doesn’t receive the treatment, Dr. Stone told us, she’ll be facing multiple organ failure, cancers and more within 10 years.”
A recent decision by the family’s insurance company added yet another layer of financial concern.
“I was hoping to raise $5,000 for travel-related expenses. We do have amazing Nationwide insurance, but yesterday (Wednesday, Jan. 3) we received a denial for the treatment because it is currently labeled for oncology only,” she said. “We’re appealing the decision. Dr. Stone and his assistant are working on the appeal. We may need significantly more money. The approval request was for four treatments. My initial GoFundMe was for the first two trips to Boston.”
With that uncertainty, the February trips may be postponed and the ante upped.
“If the appeal is not successful, we will be needing in excess of $45,000,” she said.
In the interim, the Ahwatukee family home hums with three teens, ages 15 through 18.
Adding to the blended family mix are five dogs – some the result of Manoguerro’s fostering ventures. The dogs range from a Shepherd mix weighing 25 pounds to the grand dame – a Goldendoodle tipping the scales at 80 pounds.
“They bring a lot of joy to our home,” said Manoguerra, whose ailing daughter grew up with dogs and is a canine enthusiast.
The Desert Vista High School senior aspires to study international relations at Harvard, Yale, Duke or Brown and spent much of her holiday break fine-tuning her college application essays. She is enrolled in AP classes at Desert Vista and is a member of its renowned speech and debate team. Her specialty is oratory.
“She’s definitely an overachiever,” laughed her mother.
She said that to look at her good-natured 18-year-old as she lay on her bed studying while surrounded by three dogs, a casual viewer wouldn’t think of her as suffering from any illness.
“If you met her right now, you wouldn’t know she was sick; but I see it,” Manoguerra said. “We just have to find a way to get these treatments.
“When she had all these odd medical events over the years, we never stopped asking questions. Even right now, this is impacting her lacrimal glands, salivary glands, pancreas, liver, bile ducts, and lymph nodes. If she doesn’t receive these treatments, by her mid-to-late 20s, she’ll be facing multiple organ failure, possible malignancies and the lack of production of some enzymes,” she said, her eyes tearing. “So, this treatment is critical.”
With the blizzard paralyzing Boston late last week, progress in dealing with the insurance company – like Boston’s traffic – halted or proceeded at a snail’s pace.
“When I got the (insurance) letter Wednesday, I had a little anxiety. Normally, I try to keep things really low-key. She’s already a candidate for these treatments, we just have to get it funded,” said Manoguerra. “The letter also validated my decision to go to Dr. Stone because if he can’t get do this, nobody can.”
To donate: GoFundMe.com/IGG4RD-KAM.