Kennedy Dorfman, the 2-year-old daughter of a police officer and an elementary school math teacher, is a cheerful and lively little girl – with a serious liver disease and in dire need of a transplant.
“It’s kind of scary because you wouldn’t really know, but she is very strong,” his mother, Aly Dorfman, told Fox News on Wednesday.
Kennedy was diagnosed with alpha-1 antitrypsin deficiency, a rare condition that affects the lungs and liver, on December 29. Severity varies widely and even more rarely exhibits symptoms in someone so young.
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Her father, Eric Dorfman, a veteran of the Navy and an active police officer in Suffolk County in New York, has the wrong blood type. His technically compatible mother is currently 34 weeks pregnant with Kennedy’s younger brother and is therefore not eligible to donate.
The Dorfmans hope that Aly’s sister Kelly Florio will be compatible. She is undergoing the screening process and, if it works, they can have the transplant in early March.
Kennedy Dorfman with his aunt, Kelly Florio, a potential donor.
(Courtesy: The Dorfman Family)
But while the Dorfmans have good health insurance, the costs associated with child transplants are enormous, according to Rick Lofgren, president and CEO of the nonprofit Childrens’ Organ Transplant Association, which organized a fundraising campaign to help the family to cover Kennedy’s medical care. .
“I talked to at least half a dozen families this week who have already reached their maximum (health savings account) in the first six weeks of the year,” he told Fox News late on Thursday.
Kennedy Dorfman, left, his mother Aly, father Eric and older brother Cody
(Chris Cordone / Foxlight Studios)
In addition, he said that co-payments, deductibles and travel expenses still add up – especially for a family in the suburbs who have to travel hundreds of miles a month for clinical appointments in the city, paying tolls and parking each time.
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It’s a 75-mile journey from the Dorfmans’ home at Rocky Point to New York’s Morgan Stanley Presbyterian Hospital for children in Manhattan, where Eric said they “couldn’t have found a better team to save our baby’s life.”
“In addition to fundraising, we really want to take the stress off our parents’ shoulders,” said Lofgren. “It happens enough when you have a sick child and you are literally worrying whether he will survive or not. If we can take the stress out of them, allow them to focus on Kennedy and get their health back to full, then this is a tremendous help for that family. “
Maintaining routine health appointments in the midst of the coronavirus pandemic helped diagnose Kennedy’s condition, Aly told Fox News on Wednesday.
As she was always a healthy girl, the family almost missed the doctor, Aly said, because of concerns about getting out of the coronavirus pandemic.
“She never had a cold, she never had a fever, she is just a little jaundiced now,” she said. “They put her on some medications to keep that level.”
Kennedy had almost no symptoms, but the check-up found a low platelet count, which led to referral to a pediatric oncologist, Aly said. The doctors found no trace of leukemia – but they found potentially fatal liver abnormalities and an enlarged spleen.
Such a serious case among such a young child is especially rare, according to Dr. Nicole Saphier, and she said the Dorfmans’ decision to go ahead with their medical appointments, despite the pandemic, could be life-saving.
“For children who have severe liver disease, there are some diseases that jump to the top of the differential diagnosis list because of known diseases that can manifest in childhood, however, even so, it may take a while before the diagnosis is confirmed , “she told Fox News on Wednesday. “A specific blood test is needed to look for AAT in the blood, so if the doctor doesn’t suspect, it may not be requested.”
(Chris Cordone / Foxlight Studios)
Doctors were considering the possibilities, including celiac disease, when the Dorfmans told them about Alpha-1’s family history.
“Alpha-1 is very rare,” said Eric on Wednesday. “The average person goes to seven experts before he actually finds out he has Alpha-1.”
Her father died of the disease at age 65 – just two weeks after learning that he had it and two weeks before the couple’s wedding. His uncle also had the disease and died at age 55, so they asked Kennedy’s doctors to test it – a crucial move to detect it early.
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The Dorfmans, who have already registered to become organ donors through the New York Department of Motor Vehicles, said that after this experience, they signed up to become living donors and volunteered for pre-examinations as liver and bone marrow donors. bone.
“We definitely plan to get more involved,” said Eric. “There are not enough people doing this.”