Marine vet's baby daughter, in need of liver donor, not a match with parents
Written by kslmadmin on February 10, 2021
“It’s kind of scary because you wouldn’t really know, but she is pretty strong,” her mother, Aly Dorfman, told Fox News Wednesday.
Kennedy was diagnosed with Alpha-1 Antitrypsin deficiency, a rare condition afflicting the lungs and liver, on Dec. 29. It varies greatly in severity and even more rarely exhibits symptoms in someone so young.
Her father, Eric Dorfman, a Marine veteran and active-duty police officer in New York’s Suffolk County, has the wrong blood type. Her mother, technically a match, is currently 34 weeks pregnant with Kennedy’s soon-to-be little brother and therefore ineligible to donate.
The Dorfmans are that hoping Aly’s sister, Kelly Florio, will be a match. She is currently going through the screening process, and if it works out, they could have the transplant underway by early March.
But although the Dorfmans both have good health insurance plans, the costs associated with childhood transplants are huge, according to Rick Lofgren, president and CEO of the nonprofit Childrens’ Organ Transplant Associated, which set up a fundraiser to help the family cover Kennedy’s medical care.
“I’ve talked to at least a half a dozen families this week alone that have already met their (health savings account) maximum, in the first six weeks of the year,” he told Fox News Thursday evening.
On top of that, he said copayments, deductibles and travel expenses still add up – especially for a family in the suburbs who has to travel hundreds of miles a month for clinical visits in the city, paying for tolls and parking each time.
It’s a 75 mile drive from the Dorfmans’ home in Rocky Point to the New York Presbyterian Morgan Stanley Children’s Hospital in Manhattan, where Eric said they “could not have possibly found a better team of individuals to save our baby’s life.”
“In addition to the fundraising, we really want to take that stress off our parents’ shoulders,” Lofgren said. “There’s enough going on when you have a sick child and are literally worrying about whether or not they’re going to survive. If we can take stress away from them, allow them to focus on Kennedy, and getting her back to full health and back home again, then that’s a tremendous help for that family.”
Keeping routine health care appointments amid the coronavirus pandemic helped diagnoses Kennedy’s condition, Aly told Fox News Wednesday.
Since she has mostly been a healthy baby girl, the family nearly skipped the doctor’s, Aly said, out of concerns about going out amid the coronavirus pandemic.
“She’s never had a cold, never had a fever, she’s just a little bit jaundiced right now,” she said. “They have her on some medications to keep that leveled out.”
Kennedy barely had any symptoms, but the checkup found a low platelet count, which led to a referral to a pediatric oncologist, Aly said. Doctors found no trace of leukemia – but they uncovered potentially life-threatening liver abnormalities and an enlarged spleen.
Such a severe case among a child so young is especially rare, according to Dr. Nicole Saphier, and she said the Dorfmans’ decision to go through with their medical appointments despite the pandemic could be a lifesaving decision.
“For infants presenting with severe liver disease, there are a few diseases that jump to the top of the differential diagnosis list because of known diseases that can present in infancy, however, even then, it can take a while before a diagnosis is confirmed,” she told Fox News Wednesday. “It requires a specific blood test to look for AAT in the blood, so if the clinician does not suspect it, it may not get ordered.”
Doctors were considering the possibilities, including Celiac’s disease, when the Dorfmans told them about the family history of Alpha-1.
“Alpha-1 is very rare,” Eric said Wednesday. “The average person goes to seven specialists before they actually discover that they have Alpha-1.”
His father died from the illness at 65 years old — just two weeks after learning he’d had it and two weeks before the couple’s wedding. His uncle had also had the illness and died at 55, so they asked Kennedy’s doctors to test for it – a crucial move for detecting it early.
The Dorfmans, who have already registered to become organ donors through New York’s Department of Motor Vehicles, said that after this experience, they are signing up to become living donors and volunteering for pre-screenings as liver and bone marrow donors.
“We definitely plan on getting more involved,” Eric said. “There’s not enough people out there doing it.”
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