Woodbury Elementary School third grader Ben Anco received a special holiday surprise last week.
On Dec. 10, Ben was surprised with news that he was named the 2014 State Goodwill Ambassador for the Muscular Dystrophy Association (MDA).
“I had no idea that they were going to come,” Ben said.
Family, friends, teachers, District 833 Superintendent Keith Jacobus and MDA staff surprised Ben with balloons commemorating the honor at Woodbury Elementary.
“It was nice that they did it at school in front of his classmates so that they know that he is kind of a big deal,” Ben’s father Dennis said.
Ben’s mother Page Laska, who learned of the honor two weeks ago, said it was very difficult keeping the surprise from her son.
“It was extremely hard keeping the secret,” she said. “It’s just such a proud moment for a parent because it’s such a huge accomplishment – I started to cry.”
As the MDA Goodwill Ambassador Ben will make public appearances throughout the community to encourage volunteers in MDA’s year-round educational and fundraising campaigns and will also take part in a number of special events to help promote awareness for neuromuscular diseases and raise funds for a cure.
Fellow Woodbury student, and friend of Ben’s, Bryce Madsen, was named the MDA Goodwill Ambassador last year.
“It was so nice to be able to see Bryce pass the torch,” Page said. “That was really special for us.”
New kind of normal
Ben was first officially diagnosed with spinal muscular atrophy-Type 2, one of the muscle diseases covered through MDA, when he was 2 years old.
However, Page said she suspected something when Ben was first born.
“I had kind of always known that something was up,” she said.
SMA is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement. It involves the loss of nerve cells called motor neurons in the spinal cord and is classified as a motor neuron disease. The disease causes weakness of the voluntary muscles and affects most muscles closest to the core of the body such as shoulders, hips, thighs and back. The muscles that help control breathing and swallowing are also affected causing many reparatory complications.
“To finally have a diagnosis has a peace about it,” Page said, “but then the thought became ‘where do we go from here?’”
Since Ben’s diagnosis, he and his family have adopted a new normal by calling ahead to places to make sure they are wheelchair accessible and avoiding the outdoors and public places during cold and flu seasons.
“This is all we know,” Page said.
“It’s just how it’s always been,” Dennis said. “Ben makes it easy because he’s such a good kid.”
Succeeding at school
Page said making sure Ben would succeed at school was one of her biggest fears shortly after the diagnosis.
“In addition to just the logistics of it all,” she said, “my biggest fears were would he be shy, would he make friends?”
In the beginning, Ben said he fielded a lot of the same questions from classmates: “Why are you in a wheelchair? How does that work? Can I try?”
But before long, it just became the norm.
“Ben’s personality is just so fun to be around,” Page said.
In school, Ben said his favorite class is gym, specifically baseball and hockey, and he wants to become a professional baseball player when he grows up.
Ben is currently involved in the East Metro Miracle League.
Page said she is honored that Ben can serve MDA in the capacity of Goodwill Ambassador.
“MDA truly is like your lifeline, so being able to give back is such an honor for our family,” she said. “There is just no kinder, more courageous little boy/man you will ever meet. Ben is constantly surprising us and outthinking us.”