Students raise awareness during Rare Disease Week

Avonworth freshman Jay Foster recently met Kyle Bryant, whose book, “Shifting Into High Gear” tells of his own journey with Friedreich's ataxia, a rare and disabling disease. Bryant is featured in the film, “Ataxia,” which students will view on Monday.

When Avonworth freshman Jay Foster first heard of plans for a week-long series of Fund-raising activities to support an illness that has afflicted him for the past four years, he was, at first, a bit reluctant about some of the plans.

The fund-raising will be a focal point to acknowledge Rare Disease Week, Feb. 25-28 when schools and other organizations plan events and awareness activities that can support individuals and medical teams working to find cures.

Jay's mom, Nikki Wallace, understands his reluctance.

“So often, people who have such an illness just don't want to talk about it. They do not want people to know that they are different.”

But after giving it some thought, he changed his mind, and so Jay will address students in grades 9-12 in a Monday, Feb. 25, assembly that will kick off a week-long series of activities that will be informative as well as competitively enjoyable and financially supportive of efforts to find a cure.

Jay's mind-change came after thinking about the size of the crowd he would be addressing.

“It won't be that many people, so it won't be confusing to anyone. Plus, it gives me a chance to express myself.”

Jay first started showing symptoms of a disease that was making him “different” during his fifth grade year when he and mom Nikki and stepdad Tom were living in northern Virginia, just outside of Washington, DC.

Nikki explains, “One day in baseball, he couldn't coordinate stepping and swinging when up to bat. It felt like it happened overnight. He also experienced poor coordination with gloves handling the baseball. We then moved on to soccer, where he played various positions. He started to run uncoordinated, as if his legs weighed several hundred pounds each. Jay also would trip and fall easily. I would take videos of his gait during practice and games, but the pediatricians thought nothing was wrong.”

At the same time, he began to experience issues with handwriting.

“His kindergarten handwriting was better than his fifth grade handwriting,” Nikki recalls.

His health continued to spiral downward.

Jay started to lose hearing and vision, and his fine motor skills were declining. As his condition worsened, medical testing first disclosed heart disease. Six months later, after genetic testing and a visual neurology specialist diagnosis, doctors concluded that Jay had contracted Friedreich Ataxia, the FA abbreviation more familiar than the actual term. A Web site describes FA as being “...a rare inherited disease that causes progressive nervous system damage and movement problems. It usually begins in childhood and leads to impaired muscle coordination (ataxia) that worsens over time.”

Most students and some faculty members were not aware of Jay's disease until recently, he and his family having moved to the district just a few months ago.

Enter a team of Jay's ninth grade teachers, Michelle George, Doug Haskins, Bre Maisner, Morgan Waddell and Jesse Wells, all who have worked to bring Rare Disease Week to the attention of the school and to provide some additional funding for those working to find a cure for FA.

Dodge-ball games, with students vs. students and students vs. teachers, have been scheduled, Feb.24-Feb. 28, $30 entrance fees required. And there will be a grade-by-grade coin collection challenge, with the winning grade being treated to a pizza party, pizzas donated by Pizza Pronto of Avalon. T-shirt sales, board games at lunch in the cafeteria, and raffles of donated items yet to be announced, all combine to raise hopes of a successful fund-raising campaign.

Jay, who turns 15 on March 16, understands the seriousness of his illness, but he is determined not to allow that illness to get the best of him. And in so many ways, rather than being “different,” he is a typical teen. He is on the Pittsburgh Penguins-Mighty Penguins sled hockey team; he loves to travel; he loves video games; he volunteers for Avonworth's Special Olympics.

He also has begun a workout regimen to stay as strong as possible.

Mom Nikki credits much of his optimism to their selection of the Avonworth School District when her husband's job forced a move to this area late last year.

“For people to have supported him so well means the world to me.” She said. “Everyone at Avonworth has been wonderful and we are so grateful for that.”

Avonworth administrators are grateful for the project that students have undertaken to help fight the disease that has afflicted one of their classmates.

High school principal Keera Dwulit said, “Watching students and teachers rally behind Jay and this courageous cause is inspiring! There is beauty in recognizing the rare and unique journey of each student. So grateful to be part of the Avonworth family!”

Her thoughts were shared by middle school principal Mike Hall: “It is wonderful to see everyone rally around a great cause. I am so impressed with Jay's strength and courage. My hope is that bringing attention to this cause will encourage everyone to recognize the uniqueness in each of us.”