By Jeanne Sager
CALLICOON — January 16, 2004 – Tragedy, unlike lightning, always seems to strike in the same place twice.
Just last month, two Callicoon families found out one of their own was stricken with a potentially fatal disease.
And while their friends and neighbors pray, 27-year-old Kristen Porter and 5-year-old Gracie Hillriegel are fighting a battle with life.
Hillriegel, the younger of the two, is a kindergartner at Sullivan West’s Delaware Valley Elementary School.
When she came home one day with a stomach ache, mom Jeannie took her in to see the doctor and walked into a parent’s worst nightmare.
Little Gracie’s white blood cells were oddly high, sending Jeannie and husband Brian rushing their daughter to Catskill Regional Medical Center.
The bad news was even worse than they expected – Gracie was diagnosed with acute lymphoblastic leukemia, leaving her tiny body helpless against infection.
The family’s next step was Westchester Medical Center, where doctors in the oncology unit decided the 5-year-old would have to undergo chemotherapy.
But even that won’t be enough, Jeannie said. According to doctors, chemo isn’t working as well as they hoped, and Gracie will have to undergo radiation next.
The Hillriegels are proud of their daughter. She’s been pricked with needles and undergone painful treatments, but she’s gotten through it all.
“Every shot she took like a champ,” Jeannie said.
But they know she’s going to be undergoing treatments for the next two to three years, a major dent in a child’s life.
And meanwhile, they have to go about their daily business. Brian has been unable to work pretty much since Gracie was diagnosed because they have to shuttle her back and forth between doctor’s visits and chemotherapy treatments in Westchester.
Jeannie runs a greenhouse, which is already closed for the winter, but Brian’s carpentry business has fallen by the wayside while he’s devoted his time to taking care of his daughter.
And when Jeannie goes out in public, she has to wear a mask to protect herself from any illnesses that she could bring home to her daughter – even a cold could be extremely dangerous for Gracie at this point.
The family has Hudson Health insurance for their daughter, but they are still paying a lot of money out of pocket between Gracie’s care, driving down to Westchester frequently and trying to maintain a normal life for their 9-year-old son Michael, a third grader at Sullivan West/Delaware Valley.
Jeannie worries at every turn that Michael may come home from school with a childhood disease and pass it on to his sister.
In a bizarre twist of events, it’s Michael who connects Porter to Gracie.
Kristen Porter’s mom, Kim Henke, is Michael’s teacher at Delaware Valley.
And when the two met for the first time in Westchester, Porter felt a connection to “another DV girl.”
Porter, the daughter of Kim and the late Michael Henke (a Callicoon farmer), graduated from the former Delaware Valley Central School in 1994.
A former lifeguard and swimming instructor at the Delaware Youth Center, hers is a familiar face to many local families whose children learned to swim under her watchful eyes.
Porter went away to college but came home, married another DV graduate and bought a house in Hortonville.
This year has been full of changes for Porter, who got a new job in the spring with the county’s Department of Public Works and watched her husband change jobs in the fall.
But the biggest challenge was yet to come.
In the beginning of November, Porter’s joints started to swell, and her stomach was filling with fluid.
She knew she had a rare genetic condition, Wilson’s disease, which affects the liver.
She’s been on medicine for it since she was about 18, when doctors realized both her parents had the recessive gene for the disease and had passed it on to their oldest child.
“They always mentioned I could need a liver transplant, but not anytime soon, sometime in the future,” Porter recalled.
But by early December, Porter was admitted into Arden Hill Hospital to have a range of tests done to see what was wrong.
By the end of the week, her doctor called her personally to tell her he was arranging to get her a bed in Westchester.
At that point, she said, she had no idea what was going on. But she soon found out.
She was put on a short list for a liver transplant on a Wednesday. On Friday, they had the liver from a cadaver in the Buffalo area.
Porter went into the operating room at 1 a.m., and by 8:30 a.m. she was out with a piece of another person pumping life into her body.
“I feel like a completely different person,” she said. “I got a Christmas present I wasn’t expecting – I’m so blessed.”
Porter’s got a long road ahead of her. Her immune system is in an extremely dangerous position – getting a cold could put her back in critical care at the hospital.
Although she was able to come home from the hospital in time for Christmas, she can only leave the house to go back to Westchester for her frequent appointments with the transplant experts.
She won’t be allowed to go back to work until possibly April, leaving her husband to put food on the table, pay their new mortgage, and do all the family’s errands.
Porter can’t even do many of the things she used to love – they’ve even told her to stay away from gardening because of the organisms in dirt.
“I’m a farm girl – how can I not get dirty?” she noted.
But Porter is ready to handle anything, she said.
“I’m alive, I don’t care,” is her attitude. “I’m a lot better off than a lot of people.
“This morning, I woke up and thanked God for life,” she continued. “I can’t wait to write to that family [whose relative’s liver was donated] and say how I can’t wait to live life.”
That’s how she feels about the drugs she’ll be on for the rest of her life, and about having to turn over all the kitty litter duties to her husband so cat Cinnamon can’t pass on any diseases.
In all, she’s keeping her spirits up with laughter and family.
“I couldn’t have done this without him,” she said of husband Jimmy.
And she’s gone so far as to name her new liver “Marvin Lukes Liver” after her doctor and Luke, the patron saint of healing.
“If you don’t have laughter, life would be crumbling down around you,” Porter explained.
And Porter keeps her eyes on Gracie, who she spent time with at Westchester.
“She’s an amazing little girl,” Porter said. “I couldn’t imagine what she’s going through – it’s hard enough imagining it at 27, but at 5 ...”
A fundraiser is being planned to help both families, and the public is being asked to open their hearts to the two “DV girls.”
There will be a baked ziti dinner at the Delaware Youth Center in Callicoon on Sunday, February 8, from 4 p.m. to 7 p.m. There will also be a raffle with prizes donated by local businesses.
Residents can drop off pans of baked ziti or desserts by 3 p.m. that day at the youth center, or stop by after 4 p.m. to have dinner. The cost will be $7 for adults, $5 for children and free for children under age 5.
The snowdate for the fundraiser is February 15 from 4 p.m. to 7 p.m.
Both families have already expressed their gratitude to their neighbors and friends.
“We didn’t want to have to ask for help,” Jeannie Hillriegel said. “But there are a lot of people you meet who are so supportive.
“Anything people will do is very appreciated,” she added.
For Porter, the outpouring of love and support reminded her of why Callicoon is such a nice place to live.
“It’s why we live here,” she said. “Not everyone can say that about the place they live – it’s awesome.”
For more information on the two families and the fundraiser, call reporter Jeanne Sager at 887-5200.