Advocating for those in needSpinal Muscular Atrophy is the number one genetic killer in infants, and three families in Woodbury have faced it.
Spinal Muscular Atrophy is the number one genetic killer in infants, and three families in Woodbury have faced it.
Woodbury native Terisa Syvertsen has organized a fundraiser to help these families in need, because it is a disease that few know about.
“It’s like any disease or any illness, it’s good to get the word out because not a lot of people know about it,” she said. “The more I learned about the families and SMA itself, the more I wanted to help.”
SMA is a genetic disease that is caused by loss of the signal or contract that is transmitted from the spinal cord. The primary symptom of SMA is muscle weakness but can also include, poor muscle tone, limpness, difficulty sucking or swallowing, feeding difficulties and sometimes even an inability to sit up, lift their head or breathe on their own.
“A lot of times you have this perfectly healthy baby and you don’t realize something’s wrong until further down the road,” Syvertsen said. “I had no idea about this.”
Syvertsen first became familiar with SMA when she was avidly looking for a cause to fundraise for through the St. Thomas Law School when her younger sister mentioned a student she knew who was suffering from the illness.
“It just seemed like this would be a great cause to raise money for,” she said.
After meeting with the family of one of the children, she came to learn that there were many more families in Woodbury suffering with the same condition.
“You wouldn’t even know these kids had this disease because it’s just part of who they are,” she said. “They just really touched my life because they don’t let it get them down.
“They’re probably the most positive kids I’ve ever met and they’re dealing with this everyday.”
Syvertsen initially wanted to host the fundraiser at St. Thomas, but since she was not able to organize anything until next Fall, she decided to bring the cause to Woodbury sooner.
“I wanted to bring awareness to the disease,” she said. “And the families also want to bring awareness.”
The St. Thomas fundraiser in the fall will not only be donating money to the affected families, but also to SMA research.
The purpose behind the two fundraisers is because there are so many added expenses to these families that people don’t really think about, such as remodeling their home to cater to their children’s needs, installing lifts in homes, and upgrading wheelchairs, most of which insurance does not cover.
“You just don’t think about all the things they have to go through in their daily life,” Syvertsen said. “It’s just all those things that people don’t really think about.”
Syvertsen said her goal is to raise $60,000 to be divided by the three families, but she knows that in these economic times that is a “reach for the stars” type of goal.
Syvertsen said she hopes that the Woodbury fundraiser will become an annual event because it is such a good cause and it affects so many people.
“I really do believe that my calling in life is to help people,” she said. “It’s just something that’s going to stay dear to my heart.”
The Spinal Muscular Atrophy Fundraiser will be Saturday April 18 from 3 to 6 p.m. at Throwbacks Bar and Grill, 1690 Woodlane Drive, Woodbury.
Ticket prices are $10 for adults and $5 for students. The fundraiser will include a spaghetti dinner, a Guitar Hero competition, a karaoke competition, raffles and other games and prizes.
An informational video interviewing the families will also be shown.