Local family raises funds for Angelman's Syndrome research
On Saturday afternoon, Melody Lanes Family Entertainment Center was a destination for people from throughout the community to come together for a fundraiser for Team Tenley, raising funds for a rare condition called Angelman’s Syndrome. Team Tenley formed six years ago shortly after the Birhanzl family received a diagnosis of Angelman’s Syndrome for their daughter Tenley. Her mother, Kati says that when they first received the diagnosis, the Angelman’s Syndrome Foundation was one of the first resources they were connected with by physicians. The foundation raises funds for research for a cure - a cure they are optimistically growing closer to finding as the website notes. “It is believed that there is a high chance of finding a cure for Angelman’s Syndrome due to the fact that scientists know what causes AS and have been able to reverse it in mouse models,” the website (angelman.org) says.
Being connected with the foundation, the Birhanzl family has been a part of annual National walks that not only help to raise funds for research but also allow an opportunity for families with AS diagnosis to join together for networking and support. Three years ago, the Birhanzl’s were approached by father Travis’s sister Kelsey Bristle about organizing a 5K walk/run to raise the funds locally for the annual National Walk. Since then, Travis and Kati, along with organizer Kelsey have organized two additional fundraisers at the local bowling alley. “We started with ten sponsors, now we’re up to 25 who have donated their time and money to help,” said Kelsey. “Tenley has touched a lot of lives.”
The sponsorships help to pay for the cost of the bowling, with some leftover to add to the pool of funds raised at the event through the sales of t-shirts and bracelets that are donated to the Angelman’s Syndrome Foundation by Team Tenley. This year, Tenley’s sister Emmary designed a custom bracelet using Angelman’s colors for purchase as well. The walk will be held in May, for the second year virtually as COVID continues to keep in-person events limited. The Birhanzls head up the Minnesota walk for the last couple of years and are doing so again this year. Usually, the walk would be held in Willmar at the Robin’s Island Park as Kati notes the park is adaptive and accessible. This year with the virtual walk, an entire week of online activities and ways to participate are planned to help keep the families connected.
Angelman's Syndrome is a rare genetic disorder that shares some characteristics of autism, cerebral palsy and Prader-Will Syndrome. The condition is so rare that it occurs in just one in 15,000 births. “It is a chromosome deletion that is a genetic anomaly,” explains Kati. Symptoms can include developmental delays, delayed motor skills such as crawling, feeding issues, delayed ability to walk and an unstable gait, and a lack of speech. Angelman’s Syndrome can also include more severe symptoms such as seizures and sleep problems.
“When she was first diagnosed they told us she’d never walk and talk,” says Kati. However, Tenley walks with assistance. “It was explained by her neurologist that she can understand everything we are saying but she can’t communicate back,” Kati explains. Tenley is also affected by seizures and sleep issues. Her father, Travis, says, “What it affects and what it impacts varies. Some kids learn to walk and talk and potty train and some never do, so they couldn’t tell us what to expect. But we don’t limit what we expect from her - she’s a very determined little girl.”
Tenley participates in the equine therapy program at Lee-Mar Ranch, which the family says they are very grateful to have available locally.
One other notable aspect of Angleman’s Syndrome is a happy personality, and Tenley exhibits that fully. As she played arcade games and interacted with guests at the fundraiser Saturday, eight-year-old Tenley was full of smiles and happy motions. “I like people to know,” says Kati. “She likes seeing her friends at school and we like for them to ask questions and learn and interact with her.”
Anyone interested in donating to Team Tenley for the Annual walk is invited to contact Travis or Kati Birhanzl or Travis’s sister Kelsey Bristle. “And we’re always happy to answer questions,” says Kati.