by Samara Postuma
Elli Hoffmeister is a 15 year old St. Michael-Albertville student with Juvenile Huntingtons Disease.
Huntington’s Disease is a hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral and physical control. Over time the disease affects one’s ability to walk, think talk and reason and there is currently no treatment or cure. Fewer than 10 percent of individuals with Huntington’s develop symptoms before age 20.
Elli’s parents had been noticing changes in her development for some time and after attending a local conference on Huntington’s decided it was time to visit a neurologist.
“Last fall everything started to make sense that it was Huntington’s,” Elli’s mother, Camille Tulenchik said. “Around the time she was 10 she started showing signs of learning disabilities, then in middle school it was social issues and then sports, it all lined up and made sense.”
This past January, the family met Dr. Martha Nance at Hennepin County Medical Center who ordered a blood test to find out if she did indeed have Huntington’s. In March, the diagnosis came and was positive. Current statistics show that there are only 31 kids in the country with Huntington’s.
While there is currently no cure, the family has a lot of peace and hope for the future. “God has a plan,” Tulenchik writes on Elli’s caringbridge page at www.caringbridge.com/visit/ellihofmeister.
Tulenchik remains positive amidst the unknown. “I can only focus on today and I know that God is holding us up. We also have a strong family that helps,” she said.
As for Elli, “She doesn’t dwell on it and since she stopped maturing emotionally at age 10 she is just a sweet, innocent 10 year old,” Tulenchik said. “She’s just thankful for the love.”
Because of Elli’s diagnosis, her family anticipates future expenses due to medical expenses, research and even future home modifications that will need to take place for Elli. They also hope to raise funds so that they can help fulfill some of Elli’s dreams. The family recently had their fundraiser at Cherry Berry raising over $2,000.
Her mother said, “The night was a total success!! I want to thank everyone so incredibly much for your donations and support. It was a success emotionally! I think it has really helped Elli see how much support she has, and the whole family for that matter. It takes the load off Elli’s shoulders not having to explain what JHD is. .. It’s hard enough for me to understand.”
The family is hosting their second fundraiser scheduled for Saturday, Sept. 21, at the St. Michael Rec Center. Supporters, calling themselves All for Elli, have coordinated a kickball tournament and kiddie carnival to take place that anyone in the community is welcome to attend. The event will begin at 7:30 a.m. and goes until 10 p.m. with activities for the entire family.