Family, community, even sea creatures embrace Butler Twp. child with incurable disease
The outgoing, active and bouncy personality of Kora Houtz, 8, belies the fact she is in stage 3 kidney disease as she fights an illness diagnosed in only 2,000 people around the globe.
Parents Khloe and Jordan Houtz, of Butler Township, noticed when Kora was almost 2 years old she began losing weight and was uninterested in eating anything but salty foods, like pickles.
Her parents agreed the tot also drank an inordinate amount of fluids for a child her age.
Thinking she suffered from Celiac’s disease, Khloe took her daughter to the family doctor three or four times before becoming frustrated by the lack of answers.
“Finally, I said, ‘I’m not leaving here without blood work,’” Khloe recalled.
The doctor ordered a blood screen panel and called the Houtzes when he received the results at 10:30 p.m.
“He said ‘You have to pack a bag and get down to (UPMC) Children’s Hospital,” Khloe said.
Once there, doctors ran one blood test three times because they could not believe Kora’s kidney results were so horribly skewed.
The toddler was admitted to the hospital that night and remained there for two weeks.
On the fourth or fifth day, an ophthalmologist examined little Kora’s eyes and was shocked to see crystals looking back at him.
He suspected Kora had cystinosis, a rare disease that effects every cell in the body — but mainly the kidneys and eyes.
“Blood work confirmed it,” Khloe said. “At first, I was sad and I cried a lot. Now I literally just take every good day and cherish it.”
Now a second-grade student at McQuistion Elementary School, Kora takes medicine 10 times a day to replenish the electrolytes lost to the disease, as well as eye drops four times a day.
The family sings the praises of Michelle Harold, McQuistion’s school nurse, who has made it her mission to ensure Kora receives her education as normally as possible while dealing with her disease and medications.
“She and the school nurse are really close,” Khloe said. “I personally could not have asked for a better caretaker for when I’m not around.”
After Kora was diagnosed, the family held a spaghetti dinner fundraiser at Prospect Volunteer Fire Department to bring in money to help pay for the family’s multiple trips to the hospital and all the expenses that go along with it.
Kora’s medical treatment mostly is paid for through Jordan’s employer, Facchiano Contracting of Pittsburgh, where he is a foreman.
The company, Jordan said, has been very flexible in allowing him time off when Kora needs him.
“He’s a heck of a guy,” he said of his boss and company owner Michael Facchiano. “They know that sometimes I have to stay at the hospital with Kora and if I have to leave, I leave.”
But the company went one giant step further when Facchiano himself initiated a Make-A-Wish for Kora and her family.
The entire family spent Aug. 20 to 26 in the Florida Keys, interacting with dolphins and sea lions and enjoying meals out in restaurants each night.
Kora got to swim with dolphins in the lagoon at Dolphins Plus Bayside in Key Largo, and a dolphin even gave her a kiss.
“They felt like velvet,” Kora said as she jumped up and down with excitement at the memory.
She also accompanied her family — which includes sister Hadlee, 9, and brother Ryder, 4 — on a boat ride in the Keys during which dolphins leapt out of the water and seemed to fly beside the whizzing craft before diving back into the saltwater.
“On the boat ride, we were looking at dolphins and we saw a lot of lizards,” Halle said.
Ryder’s favorite was the crystal-clear hotel pools during the trip.
At Islamorada, also in the Florida Keys, the family visited Theater of the Sea, where Kora painted with a sea lion, attended dolphin and parrot shows with her family and enjoyed eating at the famous Robbie’s of Islamorada.
“My favorite was the spicy shrimp tacos,” Kora declared. “I can eat anything spicy and not have to drink water.”
During the family’s Make-A-Wish stay in Florida, Kora and her family allowed their worries to fly away on the ocean breezes.
“The trip was so good for her to just go and do fun things,” Khloe said. “She was on cloud nine, just so excited and happy. She didn’t have a worry in the world.”
Jordan, who is nearly tackled by an excited Kora when he returns home from work each day, agreed with his wife.
“She got to live like a kid for a week, where she didn’t have to take medicine at school,” he said. “It was almost normal for her.”
Khloe said Kora was so enamored of the Florida Keys she asked her mother to have her grandmother ship her tiny dog, Teddy, so they wouldn’t have to return home.
“It was fun,” Kora said, beaming at the memory. “I got kisses from a dolphin and hugs from a sea lion.”
Make-A-Wish also arranged for Kora to design her own pizza at Caliente, a Pittsburgh-area restaurant, with Steelers defensive tackle Larry Ogunjobi.
Ogunjobi named the pizza “Kora Strong,” and until the end of December, the restaurant will donate almost half the profit from each pizza sold to Make-A-Wish.
“I want other kids to get their wishes,” Khloe said.
Caliente also donated two wishes on top of the proceeds from the Kora Strong pizza — which has chicken, cherry tomatoes, black olives, spinach, chicken, feta, provolone and mozzarella cheeses, plus a drizzle of balsamic vinaigrette on top.
“She came up with that herself,” Khloe said.
Khloe said because her daughter’s condition is so rare, children and the general public should be more aware of the disease, which traps the amino acid known as cystine in every cell in the body.
“My 2023 New Year’s resolution was to raise awareness about cystinosis,” she said.
So she wrote a children’s book titled “I am Kora Strong.” The cover boasts a drawing of a happy, yet fierce blond girl with one hand on her hip and the other flexing her muscles. Both Kora and her little dog, Teddy, are wearing red superhero capes in the illustration.
Kora’s nephrologist wrote the forward for the book, in which he details the challenges inherent in the condition, a disease Kora will not allow to slow her down.
“She doesn’t let cystinosis define her,” the doctor wrote. “She is Kora strong.”
The story, with colorful illustrations by an artist Khloe found online, allows kids — and adults — learn about cystinosis.
“It’s just kind of a day in the life of Kora,” Khloe said.
The Houtz family held a book-signing in July at Totalus on East Jefferson Street in Butler.
“Kora signed all the books,” Khloe said. “She signed about 60.”
Kora also read the book to her class at McQuistion, Khloe said. The book is available on amazon.com for $10.
Now that the hubbub of the Make-A-Wish trip, pizza night and book release have settled down, the Houtz’s busy lives go on as they raise their children and deal with Kora’s needs.
Khloe said between her ophthalmologist, nephrologist, pulmonologist, neurosurgeon and ear, nose and throat doctor, the tyke has a doctor’s appointment every three months.
Her latest blood work — a process that greatly upsets Kora — showed her levels are stable, which elated the family.
But once her kidney function reaches a certain level, she will need a kidney and liver transplant, Khloe said.
“There is no cure for cystinosis,” she said.