When 2-year-old Sydney Mickel recently developed a cough, her mother panicked.
A cough isn’t much to worry about in most 2-year-olds, but for Sydney, who has cystic fibrosis, a cough could be a catalyst for catastrophe. Her mother, Julie Gosselin, froze in fear.
“That’s something that a lot of the kids do all the time, but she’s never done it, so I’m just like, ‘What is this?’ ” Gosselin said.
Gosselin will be asking the doctors at Albany Med, a hospital visit Sydney makes every two months.
Cystic fibrosis is a chronic, progressive and often fatal genetic disease of the body’s mucus glands, according to the Centers for Disease Control. CF primarily affects the respiratory and digestive systems in children and young adults. On average, individuals with CF have a lifespan of approximately 30 years.
Sydney has also made more than a dozen trips to Kansas City, Missouri, where she is part of a clinical trial for a drug called Kalydeco, which helps treat Sydney’s particular mutation of the CF gene.
To help the family, the Whitehall community is organizing a chicken and biscuits benefit dinner and basket raffle event at 4:30 p.m. Tuesday at the Elks building at 5 Elks Way off North Williams Street.
The Elks have been trying to plan the fundraiser for more than a year to help defray the costs of battling the disease for the family.
“She’s a beautiful baby,” said Elks Trustee Michael Rocque. “She kind of really touched my heart.”
Rocque is also visiting local businesses, asking for monetary and basket donations, and hopes to raise more than $6,000.
Because Sydney is part of a clinical trial, most of the travel expenses are reimbursed, but not all, and not in a timely manner.
That’s a lot of travel and extra expense, said Sydney’s father, Adam Mickel, who praised Gosselin, who has gone on every trip to Missouri. Mickel has made the trip once and is going on the next one.
Mickel said the family is humbled by the generosity of the Whitehall community.
“Whitehall is a truly special place to live,” he added. “The outpour of support has also come from friends and families in neighboring communities.”
Mickel said he was in disbelief and denial when he first learned of Sydney’s diagnosis.
“Personally, it sent me into a personal depression,” Mickel said. “Despite this, I try to picture her as any normal child her age.”
Gosselin, however, was less surprised. She said she always felt that if she had another baby girl, she would have some sort of illness. She never anticipated cystic fibrosis, however, since she tested negative during pregnancy.
The test for cystic fibrosis, Gosselin said, only covers the most common types of CF.
“It’s just one of those things that nobody tells you that it only covers like 100 types, so you don’t know,” she added.
Hospitals now test babies for the genetic disorder, and at birth Sydney did test positive, but the family thought she would only be a carrier, since Gosselin knew she was negative.
Turns out Gosselin was a carrier of a rare mutation of the gene, one that doesn’t show up in the typical tests for CF.
Sydney’s six-week checkup confirmed their fears.
Sydney’s particular mutation affects her pancreas and her ability to digest food, which explains why Gosselin was changing up to 13 soiled diapers a day.
“When you eat something fatty, your pancreas releases enzymes to break it down so your body can absorb it,” Gosselin explained. “Hers works, however it is clogged by mucus.”
Only about 4 percent of children have this mutation.
With a diagnosis in hand, the family started researching possible treatments and was able to secure her a spot in the clinical trial for the medication Kalydeco, which she has now been taking for just over a year.
Sydney travels to Missouri every two months, and while some food, travel and hotel stays are reimbursed, flights are often delayed, which is difficult to navigate with a toddler in tow.
“Logistically, it’s been a nightmare coordinating rides, and the unscheduled delays and overnights not planned,” Mickel said. “Add with that the up-front expenses associated with outfitting and feeding, caring for an infant-toddler is an uphill battle.”
Gosselin said the family doesn’t have a future prognosis for Sydney, since her mutation is so rare. Right now, she is just looking forward to the benefit, which also happens to be the first day of spring.
Gosselin didn’t want to appear as if she was begging for money. But she pointed out that having a chronically sick child who has to travel to doctors doesn’t allow her to work as much as she normally would.
“If she gets sick, she has appointments,” she said. “I have to go. Who’s going to take her if I don’t?”