MAHOPAC, N.Y.— Christine Stack remembers the exact time and day that her then eight-month-old daughter, Jacqueline, was diagnosed with cystic fibrosis.
“It was March 22, 2001—4:09 p.m.,” Stack recalled. “I was waiting patiently for the doctor to call; he said he’d call after 2. Then the phone finally rang. I remember it was like yesterday.”
While the diagnosis shook Christine and her husband Tom to the core, they weren’t going stand by and do nothing.
“My first question was: ‘Why don’t we have a cure?’” Stack said. “They are telling me the lifespan [for someone with cystic fibrosis] is in their 20s and thought this cannot be. We were in our 30s at the time and had already outlived our child’s predicted lifespan and we thought we had to fight back. I needed to help fund research to buy more birthdays for my daughter.”
And thus Freezin’ for a Reason was born. It has become an annual early-spring Mahopac event in which brave and hardy souls dive into the chilly lake at Sycamore Park to help raise money for the Cystic Fibrosis Foundation. On Saturday, April 9, the Stack family will mark their 15th annual Freezin’ for a Reason. During that decade-and-a-half period, the event has raised an astonishing $1.6 million for the Foundation.
But this year’s Freezin’ for a Reason will also be the last.
Jacqueline is now 15, a sophomore at Mahopac High, playing soccer and doing well. And her mom is ready to return to work full-time, leaving little time to organize a demanding fundraiser.
“It takes a lot of time and you either do it properly or not at all,” Stack said. “And I want to go to all [Jacqueline’s] soccer events. Next year I want to be at all her games. I want to be able to travel with her.”
And it’s not just Jacqueline who needs her attention—her twin daughters and husband have been patient and supportive throughout the Freezin’ for a Reason years—but now, Stack says, it’s time to give back to her family.
“I would have boxes all over my house and we had cereal for dinner but my family has never complained,” she said. “They have been awesome and I want to be there for them now.”
Stack said if the right person came along, she would have been willing to pass the Freezin’ reins on to them, but so far that hasn’t happened.
“It’s my baby and I wouldn’t want to turn it over to just anybody,” she said.
A new drug, Kalydeco, arrived on the scene about three years ago and it has worked miracles. To appreciate what the drug has done for Jacqueline, you have to go on her journey with her.
She was born July 5, 2001, and about a month later her mother noticed she was having a difficult time breathing. Doctors performed a number of tests and could find nothing wrong. But then, at the age of 2 and a half, she landed in the hospital with something called RSV—respiratory syncytial virus.
“It’s very dangerous for babies,” Stack said. “She was on oxygen. But her twin sisters were 3 and [doctors] thought maybe they brought something back to the house and spread it.”
But at six months old, Jacqueline was back in the hospital with more respiratory issues.
“But no one was ever thinking cystic fibrosis,” Stack said.
According to the Mayo Clinic, cystic fibrosis is an inherited disorder that causes severe damage to the lungs and digestive system. It affects the cells that produce mucus, sweat and digestive juices. These secreted fluids are normally thin and slippery. But in people with cystic fibrosis, a defective gene causes the secretions to become thick and sticky. Instead of acting as a lubricant, the secretions plug up tubes, ducts and passageways, especially in the lungs and pancreas.
The test to determine cystic fibrosis is known as a “sweat test.” They literally test the sweat to measure chloride concentrations.
“She had the test done on March 22, 2001,” Stack recalled. “I remember, when she was a baby I would lick her feet and it tasted like a potato chip bag. Too much salt in the body causes mucus to get thick and makes it hard to breathe.”
After the diagnosis, the Stacks took part in their first cystic fibrosis fundraiser just two months later—a walk at Rye Playland. There, they befriended a couple who had a daughter who also suffered from the disease.
“We found out they jumped in the ocean at Rockaway Beach for a fundraiser,” Stack said. “I thought, we don’t have beaches in Mahopac but we have lakes. And how often do you get to tell people to go jump in a lake? That’s how Freezin’ for a Reason was born.”
The event started at the restaurant Dockside and then a couple years later moved to the Mahopac golf course and eventually moved to Sycamore Park so they could include games for the kids.
“When we first started we had less than 100 jumpers; maybe 80,” Stack said. “The most we have had is 300. Last year we had about 225 to 250. It’s like a walk—you get sponsors; it’s the same theory. Instead of doing the walk, you jump in the lake. When you say you’re jumping in the cold water, [sponsors] aren’t going to give just five dollars.”
In Freezin’ for a Reason’s 10th year, they raised about $178,000—an event record that still stands today.
Stack said doctors told her that one of the most important things for a cystic fibrosis patient is vigorous exercise. So, at an early age, they turned Jacqueline onto soccer.
“We got her out there on the field at the age of 6 and thank god she loved the game,” Stack said. “She is the best-case scenario. The running has really kept her lungs healthy. She would play soccer five days a week when she can. She plays for a club team— New York Exchange—a private club.”
And while kalydeco won’t cure cystic fibrosis, it will stop it in its tracks. So since Jacqueline’s lungs were in such great shape when she began taking it three years ago, her prognosis has brightened considerably.
“She was 12 when she started taking it and she is doing amazing now. She is doing beautifully,” Stack said. “[Kalydeco] has to do with a protein not working properly. It opens the door for the protein to get out and work properly. After two months of being on it, she had a normal sweat test. How amazing is that? We had the same woman who did the original test do that [more recent] test and she said she thought she would never see this in her lifetime. Look how far we have come. When Jacqueline was born, kalydeco wasn’t even a thought. I call it a cure because it normalizes [the disease]. It won’t reverse the condition but it can stop the disease from progressing.”
So with Jacqueline back on track and doing well, and her family needing her, Stack said she is ready to say goodbye to Freezin’ for a Reason, although it will be difficult.
I am going to miss it; the day of Freezin’ is just so much fun,” she said. “The faces that they make when they come out of the water; the laughter and giggles. We have incorporated so many games—stupid, silly games. The giggles are the best and having a good time. I will miss that part of it. I loved the comradery.”
Jacqueline says as she grew older, she grew to appreciate Freezin’ for a Reason for what it really was.
“When I was little, I thought it was a fun day for the community and the bonus was jumping in a freezing lake,” she said. “As I began to realize the importance of bringing awareness and raising money, I saw how dedicated my family and friends were in helping. I was glad to see how many members of the community came out and supported. I am thankful to everyone who has supported Freezin’ for many years because without them we wouldn’t have a cure.”
Stack gave credit to her team of volunteers and the Mahopac community for making Freezin’ such a success and an iconic tradition.
“I have an amazing crew of ladies who help me and I’ve been very fortunate, but now they have gone back to work, as well,” she said. “But how lucky have we been to be able to do it for 15 years? We are so blessed by this community and the people who come back year after year. People’s time is so precious and we were grateful for their time.
“As a parent, when people are kind to your children, you are so grateful. I know we (Mahopac) get beat up sometimes—but there are so many great people here. Freezin’ for a Reason is not something you put on overnight; lots of TLC goes into it.”
Stack said that neither she nor her daughter ever sought the spotlight; they just wanted to find a cure.
“I always said, you don’t have to give me a plaque with my name on it; just find a cure for my baby,” Stack said. “And Jacqueline is kind of private and never wanted it to be about her. It’s about raising money for research for the Cystic Fibrosis Foundation.”
For more information about this year’s Freezin’ for a Reason, visit FreezinForCysticFibrosis.com, email freezinforCF@verizon.net, or call 845-222-6233.