Ailing girl will get wish fulfilled
Katheryn Houghton | Hagadone News Network | UPDATED 9 years, 9 months AGO
On Sunday, a Kalispell mother and daughter will take their first flight together that’s not on an air ambulance.
Make a Wish Montana is sending 7-year-old Paisha Dillree-Gallery to Disneyland in California. Paisha is one of 40 youths facing life-threatening illnesses for whom the Montana Make a Wish branch intends to fulfill wishes this year, according to Doug Koester, chief executive officer of the nonprofit.
“The vision is to one day reach every eligible kid in the state, and there’s lot of kids we’re not reaching yet,” Koester said. “Stories like Paisha’s is why we do this.”
By age 6, Paisha had been flown by air ambulances three times.
Leanna Dillree said she explains her daughter’s condition to people one definition at a time: She doesn’t walk or talk because of a chromosome disorder, she won’t look you in the eye because she’s legally blind and sometimes she stops moving or twitches because of her seizures.
They have learned to live between the hospital trips and medical appointments. The extras in life, such as vacations, push the duo out of their comfort zone, Dillree said.
“People keep asking me why I’m so nervous. I can’t explain that I don’t know how to take a flight with her unless there’s a hospital bed and two nurses in there with us,” Dillree said.
A scar on the right side of Paisha’s head is from the third time she was airlifted after fluid on her brain began to infect her body, a condition known as hydrocephalus.
Dillree said Paisha beats the odds, just not the ones she envisioned for her daughter.
One or two of every 1,000 newborns have hydrocephalus, The National Institute of Neurological Disorders estimated.
Paisha was 4 months old the first time she had a seizure. Dillree watched as Paisha’s leg began to twitch as she rocked in a baby swing. The twitch moved up the left side of her body until it took over her head. Dillree estimated Paisha has roughly 30 seizures a day — down from 100.
Ten children in 1,000 have that form of epilepsy, according to the Centers for Disease Control.
Paisha also has Triple X syndrome, which means she has an additional chromosome that led to learning disabilities and low muscle tone.
One in 1,000 newborn girls have the syndrome, according to the U.S. National Library of Medicine.
Dillree said Disneyland will be a break from their four weekly therapy sessions — occupational, physical, speech and swimming.
During a recent occupational therapy session, Paisha’s therapist of three years, Sonia Peterson, pushed her in a swing made of a wooden board and a beanbag chair.
“She’s lived most of her life missing the motions kids go through every day, simple things like swinging at a park,” Peterson said. “In this class, we try to catch her up with what her classmates experience all the time.”
Dillree added: “We used to go to the park, but her body is too long for the equipment now.”
She stopped. “She’s having another seizure,” Dillree said.
Dillree held Paisha’s head for a few seconds as she talked to Peterson about the therapy they would continue in California. Then Paisha was back and laughed before continuing her lesson.
“She always comes out of her seizures with a big smile. Some kids cry, but it gets Paisha’s tickle spot, I guess,” Dillree said. “A seizure actually gave us a good photo with Santa this year, but it totally scared Santa.”
Dillree said she hopes the therapy one day will help Paisha walk with a walker and say a few vital words.
For now, Dillree carries her daughter or uses a wheelchair and Paisha communicates through humming — saying words without opening her mouth. She mocks noises — the snap of a camera, her mom’s laugh, the sound her finger makes on a rough surface.
Dillree said to prepare for the trip to Disneyland, she has researched what rides her daughter would like. Paisha is drawn to colorful lights, she hums with music and smiles in a swing — making “It’s a Small World” and “Splash Mountain” top picks so far, Dillree said.
They will stay on Disney property, do a meet-and-greet with Disney’s “Frozen” characters and go swimming for a day in San Diego’s Legoland Pool.
“We’re going to do this trip like everything else,” Dillree said. “Love the moments of calm we get and handle whatever comes up.”
Reporter Katheryn Houghton may be reached at 758-4436 or by email at [email protected].
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