Fundraiser for 4-Year-Old Girl with Rare Genetic Disease

By Beacon Staff

Last year, Tasha Belston went to Disney World, rising up against the hardships of her rare genetic disease and fulfilling a once in a lifetime opportunity.

And for 4-year-old Belston, who suffers from Cockayne syndrome, her lifetime is expected to be short, bringing all the more weight to her special visit with Mickey Mouse and friends.

But her parents Jenny and Reuben of Columbia Falls are intent on making sure that more adventures are in store for Tasha, and the community can help.

On May 31, the Naked Noodle and Red Caboose Frozen Yogurt + Coffee in Whitefish are hosting a fundraiser for the Belston family. From 5-9 p.m., a portion of the proceeds from meals bought at the Naked Noodle will go to the Belstons, while from 7-10 p.m. the Red Caboose will donate proceeds from the sale of “Tasha’s Flavor.”

Cash donations will also be accepted at both locations.

“We’re just hoping to make them feel loved and show that there are a lot of people out there who care about them,” Chelsea McKoy, one of the event’s organizers, said.

Cockayne syndrome is characterized by poor growth, abnormal sensitivity to sunlight, premature aging and impaired nervous system development. Jenny Belston said life expectancy is 4 to 7 years old. Tasha will be 4 1/2 this summer. She was born on Christmas in 2006.

“I would honestly have to say she’s on the declining slope; she’s deteriorating,” Belston said. “She has really dark circles under her eyes, she’s losing her hair and she’s on liquid morphine. She doesn’t stand at all – she can’t bear any weight.”

Belston, 26, said Tasha qualified for a Medicaid program through the Child Development Center that helps with some costs for the young family. Belston has another daughter, 10-year-old Kaila. She doesn’t work because of the time she spends with Tasha and her husband earns $30,000 a year.

Even with the help of Medicaid, Belston said the family has financial concerns. There is no rainy day fund and no money to cover a worst-case scenario with Tasha.

Also, Belston said the family is going to Orlando on July 6-12 for a retreat with other kids with Cockayne syndrome. It’s the third time they’ve gone on the retreat.

“That’s part of what I think we will use the (fundraiser) money for,” she said.

The Belstons have also considered taking Tasha to visit family in Washington where she can see the Pacific Ocean. Tasha has proven durable and eager in traveling. When they visited Disney World last February, Tasha was quite fond of Stitch from the Disney movie “Lilo & Stitch.”

“She kept grabbing his head,” Belston said. “She smiled and loved every minute of it. We were able to get her on a few rides. She was quite the machine that week.”

Donations would also help to pay for UV protective clothing, blankets and sunscreen, which are no longer provided by the Child Development Center. Tasha is allergic to the sun, though this won’t stop the Belstons from taking her on adventures such as camping and fishing.

“We try to get her out as much as possible,” Belston said. “Especially as she gets older, we try to take advantage of every day we have.”

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