BARRINGTON – Adorned recently in pink and purple jewelry and a fluffy pink purse, Scarlett Sepe was ready to go to a ball – just like her favorite princess, Cinderella.
But instead of using a magical pumpkin to get there, her parents Rachel and Michael Sepe are trying to raise money for a different chariot, one that will improve their daughter’s quality of life.
Scarlett has spinal muscular atrophy, the No. 1 genetic killer of children younger than 2.
The disorder affects voluntary muscles, steadily weakening every part of the body and making movement on her own almost impossible. Scarlett never has crawled or walked.
The disease can affect breathing and swallowing, as the lungs and throat are made of muscles too.
Scarlett was diagnosed Dec. 14, 2011. She turned 2 on Sunday, and the need for mobility has increased.
“That’s part of the reason we really want to get the power chair,” Rachel said. “Turning 2, she’s going to start to realize that she’s going to want to go places and play outside with other children and play at the park.
“I don’t want to have to explain to her this summer why she can’t go out and play with her brother and sister.”
The Sepes have ordered a motorized chair, a Permobil Koala Miniflex, that will give Scarlett the independence she desires and allow her to move around and play.
The problem, Rachel said, is the chair weighs close to 300 pounds, and the family needs a vehicle that allows for safe transport of the chair and the opportunity to go places as a family of five.
The final piece of the puzzle is the Bruno Lift, an electronic arm that lifts the heavy chair into the vehicle.
While insurance will cover some of the expense, the Sepes estimate $70,000 will come out of their pockets. They are turning to the community for donations to help ease the costs.
Rachel, a fourth-grade teacher at Hough School, got help from the Wickstroms, a fellow Hough family.
Wickstrom Ford helped locate a Ford Expedition XL, and the vehicle will be held at the dealership until enough money is raised for the Sepes to buy it.
“Rachel has actually been our daughter’s teacher for a couple of years,” Richard Wickstrom said. “We’re glad we’re in a position to help out.”
While the family has done local fundraisers before, Rachel worried that doing so this time would limit their opportunities.
“Since then so many people have started following Scarlett’s blog and keeping track of her from all around the world, having just a local fundraiser doesn’t give everybody the chance to support her,” she said.
So the family went digital with a fundraising website called Go Fund Me. People can see Scarlett’s story, make donations and leave messages online.
One big part of the website is the multimedia addition. Upon hearing about the Sepe family’s need, Catherine Goetze, a reporter with BHS-TV, approached Rachel about doing a video about Scarlett to raise awareness.
“At such a young age, I don’t have a lot of money to donate,” Goetze said. “It’s really nice to know that I have the potential to make a difference in somebody’s life using something I’m good at.”
Goetze, Abe Solberg, who is one of Rachel’s former Hough students, and Peter Chung, spent a Sunday with the Sepes to film, then Catherine used the footage to put the video together.
“It was just nice to see them be able to use their talents to give back to the community,” Rachel said of seeing a former student help out.
The site was launched March 26, and by April 1, the family had received almost $5,000.
In the meantime, the very verbal Scarlett was excited to turn 2.
“I get presents,” she said.
To donate to Scarlett, visit http://www.gofundme.com/2f4suw