When I first met Ballard High School sophomore Abigale Johnson at the beginning of the school year, she was still able to walk on her own. Now, at the end of the school year, Abigale depends on her walker to maneuver the halls of Ballard High School. She is suffering from a rare inherited disease that causes progressive damage to her nervous system.
Friedreich’s ataxia (“AF”) is pulling the life right out from under her feet. The disease, which affects about one in 50,000 people in the United States, produces symptoms of poor coordination, it can lead to scoliosis, heart disease and diabetes. What it does not do is affect cognitive functions.
Abigale, also known to her friends and classmates as Alex, is finding it harder to get around not only at school, but at her home.
“When we purchased our home, we did not have a diagnosis for Abigale,” said her mother, Amanda Bailey. “If we just would have known a day sooner, we could have made arrangements to purchase a different home, one that would be more accessible for Abigale. Now we are looking at some major changes, both inside and out, in order for her to move around better.”
Bailey said that Abigale can still walk with the help of her walker, but it’s becoming harder, simply because she is noticing that her feet just don’t want to lift up like they should in order to walk.
May 19 is National Awareness Day for AF. Bailey decided to make that day a day of action — to both raise some funds that will help make the needed changes to their home for Abigale, as well as bring awareness of the disease to the community.
The family lives in Slater. It’s where they call home. It’s where they are raising their children and it’s where they want to continue to do all of the above. They will be hosting a viewing of a documentary titled, “The Ataxian,” on Saturday, May 19.
“It’s a movie about Kyle Bryant and a team of friends attempting the most grueling bicycle race in the world, The Race Across America,” explained Bailey.
The feature-length documentary, “The Ataxian,” spotlights a man whose will and determination carry him and his teammates across a continent under almost impossible conditions — an act that sparks others to take action in their own lives.
The movie will be shown at Nelson Park in Slater on Saturday, May 19, with activities beginning at 7:30 p.m. and the movie at 8:20 p.m.. A suggested donation of $5 per person and $20 per family is being requested.
“People should bring their own chairs and drinks,” added Bailey. “We will be selling popcorn and candy. The movie will make you laugh and cry and you will be inspired.”
Along with the movie, there will be several drawings taking place. You can purchase one ticket for $5 or five for $20 in hopes of taking home one of the themed baskets.
“We will have a “Date Night;” Iowa State, Iowa; a pet care basket donated by Dr. Ken May of Slater; a car care package donated by George White Chevrolet; a Norwex basket; and an art basket donated by Shawn Palek of Slater,” Bailey explained. “All the proceeds from the event will help us provide updates to our home, as well as an easier access for Abigale outside our home.”
Bailey concluded that she hopes that people will come watch the movie.
“It will help bring awareness to our community regarding such a rare disease,” she added.
Abigale is just a normal teenager with a nasty disease that is slowing her down. Her story is one of laughter and sadness. She cares deeply about the people around her. She is strong because she has to be. Her world is becoming less mobile, and she and her family need help to change that.
Come watch and listen to her story on May 19 at Nelson Park in Slater.