REHOBOTH, Mass. (WPRI) — Rett Syndrome is a very rare disease with no cure. Bella Rutko, of Rehoboth, has it. She’s four.
While the girl is one of the happiest you’ll ever meet, her life has been a roller coaster for the past two years, since she was diagnosed with Rett Syndrome.
“A lot of girls will begin to talk and walk and run, and then there’s a period of regression where they lose all that ability,” says Holly, Bella’s mother. “Bella used to have words that she said when her father came home. ‘Hi, Dad.’
“And then after her regression she never spoke again.”
Rett Syndrome is typically found in girls, and affects one in 10,000-15,000 children. Some of the most severe symptoms include seizures, gastrointestinal issues, and the inability to control basic motor functions. Holly says it puts girls like Bella in a place where they require 24-hour care for the rest of their lives.
“I’d like to say it’s gotten a little easier as time has gone on, but it’s tough,” said Bella’s father, Jeff.
Raising Bella has been a job, but extremely challenging for the Rutkos: physically, emotionally, and now financially. They’re in desperate need of a van that can accommodate Bella’s wheelchair, they say.
“She loves being out,” said Jeff. “She loves being with friends and family. She goes to Meeting Street School, so getting her to school is a hassle. The ability to allow us to get her out and around more would just make her that much happier of a child.”
The Rutkos have received a little help so far through a crowd-funding service called Support Local Stuff.
- Donate to Wheels for Bella at Support Local Stuff
- More Details: International Rett Syndrome Foundation
So far about $19,000 has been raised, but that’s still more than halfway away from their target. Click the link to Wheels for Bella to help in the effort.