Tasha's hope

Three-year-old Natasha Belston of Columbia Falls woke up this morning in a child’s dreamland called “Give Kids the World Village,” a gated community in Orlando built to house visiting children with life-threatening illnesses.

From there, her mom, Jennifer, dad, Reuben and sister Kaila plan to give the tiny toddler they call Tasha an unforgettable Valentine’s Day with Mickey Mouse at Walt Disney World.

“This is a once-in-a-lifetime opportunity,” Jennifer said in an interview last week. “It’s magical.”

For several years, she has worried that Tasha would not live long enough to see that dream come true. The little girl suffers from Cockayne syndrome, a rare genetic disorder that causes premature aging, poor growth, mental delays and other problems.

At three, Tasha is 32 inches tall and weighs just 22 pounds. With this syndrome, she is considered full grown.

“She has the severest form,” Jennifer said. “Her life expectancy is only four to seven years.”

Because her daughter could die at any time, Jennifer began working two years ago with organizations that grant wishes to dying children. She ran into some roadblocks with requirements that the child needs to vocalize a wish and attain age three to qualify.

Then she discovered Montana Hope Project, a charity funded by Montana Highway Patrol troopers. Jennifer filled out a simple application online and received a response soon after.

“I had an officer at my door saying, ‘We want to grant your daughter a wish,’” she said.

Montana Hope Project understood the nature of Tasha’s illness and agreed to send the family on the trip last February. But then Jennifer learned that the theme parks had a similar requirement that sick children must reach 3 to receive accommodations.

“I was upset,” she said. “She has such a short life span.”

Since Tasha was born, she has had surgery for a twisted intestine and five surgeries for cataracts. She also had many tests and scans before medical experts determined she had the rare Cockayne syndrome with progeria, an aging syndrome.

The family learned that Cockayne syndrome occurs in one in four births when both the mother and father carry at least one of two genetic mutations. The mutated genes provide faulty instructions so the body can’t produce two proteins involved in repairing damaged DNA.

The family faces of the heartbreak of watching Tasha rapidly deteriorate and age as damage accumulates. “She can’t swallow and she can’t stand or bear weight on her legs any more,” Jennifer said. “She got a [feeding] tube when she was 15 months old.”

Tasha’s organs age at least 8 years for every year she lives. Outward signs of aging include thinning hair and dark circles under her eyes.

The little girl wears contacts to help her see, although Jennifer said she has given her a break from wearing them.

“She’s seeing very well and her hearing is good,” she said. “She still smiles and is happy about everything.”

According to Jennifer, Tasha tries to vocalize, especially playing with her puppy Mia. The little girl lights up with laughter and smiles when her dad comes home from working at Black Magic Wash Service. She loves meeting new people.

“She definitely doesn’t know what a stranger is,” Jennifer said.

With all the medical treatments and equipment, the family has suffered through tremendous financial difficulties. Even though they had insurance, they ended up with $20,000 in bills for uncovered expenses.

She was grateful for help from family and to her pediatricians Drs. Wallace Wilder and Lynn Dyksra who wrote off what she couldn’t pay. Other institutions sued and now garnish $530 out of her husband’s modest paycheck.

“Finances this year are not as good as last year,” she said. “But I feel like there’s light at the end of the tunnel.”

Paying for a trip to make treasured memories was impossible until the Highway Patrol stepped up to the plate with Montana Hope Project. The organization spends an average of $6,000 granting wishes to critically ill children.

On Friday, Tasha and her family were scheduled to leave for a week of nonstop fun.

“We’re going to Disney World, Sea World and Universal Orlando,” Jennifer said.

Their accommodations at Give Kids the World Village feature two bedrooms and two baths. Add to this picture an ice cream parlor, a pizza place and a little restaurant built like a gingerbread house, all surrounded by a fishing pond, a train and horses to ride and miniature golf.

“Everything is free of charge,” Jennifer said. “It’s extremely exciting for the girls.”

They have a rental car to drive to the theme parks, including Walt Disney World, where Tasha finally gets meet Mickey Mouse and touch his ears as her Valentine’s Day gift from the Montana Hope Project. 

Jennifer expressed her deep appreciation to the Montana Highway Patrol officers for granting Tasha’s wish and so many other children’s.

“They all work together to give these kiddos these opportunities,” she said.

For more information about the Montana Hope Project, visit www.montanahope.org.

Reporter Candace Chase may be reached at 758-4436 or by e-mail at cchase@dailyinterlake.com.