Creating a Week to Remember for Teen With Rare Genetic Disorder

| More

Wednesday, July 18, 2012

By Jennifer Saltman

Life isn’t always easy for a shy 15-year-old girl.

Things have been extra tough the past year for Nanaimo’s Katie Schilling, who suffers from a rare genetic disorder that has confined her to a wheelchair and makes it difficult to communicate.

“It’s so hard,” Katie’s cousin, Christine Kitsch, said. “She’s just a sweet, sweet girl.”

Katie began showing symptoms of Friedreich’s ataxia (FA) when she was eight years old and her condition has steadily worsened. FA is a degenerative neuro-muscular disorder that causes progressive loss of coordination and muscle strength and leads to motor incapacitation.

“When I tell people about it nobody really knows what it is,” Kitsch said. “She can’t get out what she wants to get out because the disease is taking over her being. She’s just trapped inside this disease.”

Katie is self-conscious about her wheelchair and spends a lot of time alone in her bedroom, in spite of her mother Pam’s efforts to coax her out of the house.

To cheer her up, Kitsch’s mother Kathy Hachey invited Katie and Pam (Hachey’s sister), to stay with her in Coquitlam for a week in August.

“When [Katie] comes we make it the most fun she can,” Hachey said. “We just want to make her realize that she’s just as important as everyone else. That she’s just as beautiful and smart.”

On that note, Kitsch thought it would be fun to make Katie a princess for a day, taking her to the spa, doing a photo shoot and dinner out. When she decided to make the entire week special, Kitsch knew she needed help and turned to Facebook for donations of money and services.

“The response I got was so amazing,” Kitsch said. “So many people want to help make her feel special.”

For instance, a dinner and fundraiser will be held at Port Coquitlam’s Cat and Fiddle Pub Aug. 5 at 6 p.m. Photography and some hair and makeup services have been donated, and Katie will be a special guest at the Vancouver Aquarium.

Kitsch is still seeking donations of spa treatments, limo rides or activities, such as tickets to a show.

The plans have been kept a secret from Katie, but Pam found out and was shocked.

“I’m just speechless and I’ve been crying happy tears for the past few days,” Pam said through tears. “She’s going to be overwhelmed. You’re going to see the biggest smile on her face that so many people care about her and want her to be happy as much as possible.”

An account as been set up at Scotiabank to help the Schillings with their expenses: branch number 51490, account number 531999184023.

Find out more about Kitsch’s efforts on her Facebook event page, visit goo.gl/DQa67

Contact
Jennifer Saltman
jensaltman@theprovince.com
twitter.com/jensaltman

Source: The Province

0%
0 votes You need to be logged in to rate.