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 Wests 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 parents worst nightmare.
Little Gracies 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 familys 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 wont be enough, Jeannie said. According to doctors, chemo isnt working as well as they hoped, and Gracie will have to undergo radiation next.
The Hillriegels are proud of their daughter. Shes been pricked with needles and undergone painful treatments, but shes gotten through it all.
Every shot she took like a champ, Jeannie said.
But they know shes going to be undergoing treatments for the next two to three years, a major dent in a childs 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 doctors visits and chemotherapy treatments in Westchester.
Jeannie runs a greenhouse, which is already closed for the winter, but Brians carpentry business has fallen by the wayside while hes 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 Gracies 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, its Michael who connects Porter to Gracie.
Kristen Porters mom, Kim Henke, is Michaels 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 countys 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, Porters joints started to swell, and her stomach was filling with fluid.
She knew she had a rare genetic condition, Wilsons disease, which affects the liver.
Shes 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 wasnt expecting Im so blessed.
Porters 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 wont 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 familys errands.
Porter cant even do many of the things she used to love theyve even told her to stay away from gardening because of the organisms in dirt.
Im a farm girl how can I not get dirty? she noted.
But Porter is ready to handle anything, she said.
Im alive, I dont care, is her attitude. Im a lot better off than a lot of people.
This morning, I woke up and thanked God for life, she continued. I cant wait to write to that family [whose relatives liver was donated] and say how I cant wait to live life.
Thats how she feels about the drugs shell 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 cant pass on any diseases.
In all, shes keeping her spirits up with laughter and family.
I couldnt have done this without him, she said of husband Jimmy.
And shes gone so far as to name her new liver Marvin Lukes Liver after her doctor and Luke, the patron saint of healing.
If you dont 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.
Shes an amazing little girl, Porter said. I couldnt imagine what shes going through its 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 didnt 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.
Its why we live here, she said. Not everyone can say that about the place they live its awesome.
For more information on the two families and the fundraiser, call reporter Jeanne Sager at 887-5200.