Editor's Note: This story was submitted by The Huntington's Disease Society of America. They are solely responsible for the content, though we think it is a touching story.
Seven-year-old gives up presents to donate to local fundraiser in memory of loved ones
Autumn Margaret Kotrba, age seven, is the oldest of five siblings with another brother or sister on the way. This year, Autumn asked for money instead of gifts for her birthday. She didn't tell them why but simply explained that she wanted to do something special. On Saturday, Sept. 24 - she did just that. Autumn took all of her present savings to Lincoln Park where the Team Hope Walk/Run was held to benefit the Huntington's Disease Society of America Northern Plains Chapter (HDSA).
Her parents, Lynn and Jason Kotrba were totally surprised when she handed over $170 dollars to the volunteers at registration. "I just assumed she was saving up for an American Doll," said her Aunt, Arnette Cariveau. Heartwarming tears filled the eyes of many who witnessed this child's selfless act.
Even at seven-years-old Autumn understands that finding a cure is so much more important than getting presents. Autumn's Grandmother and Aunt both passed away from Huntington's disease (HD), her aunt sadly, just passed away in June.
All funds raised at the walk support HDSA's fight to improve the lives of people affected by HD and their families. The walk has raised close to $7,000 since its inception three years ago. The Northern Plains Chapter provides much-needed support to the many individuals and families in Grand Forks and surrounding areas who have HD. But there are many more who are at-risk.
"Huntington's disease is a family disease because of its genetic nature, and it takes the hard work of local communities to provide care, information and support for everyone affected by it," says Louise Vetter, Chief Executive Officer of HDSA.
HD is a hereditary, degenerative brain disorder that results in a loss of cognitive, behavioral and physical control. There is presently no treatment or cure for HD. Symptoms usually appear between 30 and 50 years of age and progress over a 10 to 25 year period. HD slowly diminishes one's ability to walk, think, talk and reason. Eventually, a person with HD becomes totally dependent upon others for his or her care.
One in every 10,000 people in the United States are currently diagnosed with HD. Each of their siblings and children has a 50 percent risk of developing the disease; therefore at least 200,000 Americans are at risk of developing the disease.
Lili Ann Cariveau participated in the walk as well. She is two-years-old and has already joined the fight against HD. Fortunately, her Grandpa tested negative for HD, breaking the fatal cycle in her family.
These children are a testimony to the fact that everyone, no matter what their age, can make a difference.
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The Huntington's Disease Society of America is the largest 501(c)(3) non-profit volunteer organization dedicated to improving the lives of everyone affected by Huntington's Disease. Founded in 1968 by Marjorie Guthrie, wife of folk music legend Woody Guthrie who lost his battle with HD, the Society works tirelessly to provide the family services, education, advocacy and research to provide help for today, hope for tomorrow to the more than 30,000 people diagnosed with HD in the United States. The Society is comprised of 45 local chapters and affiliates across the country with its headquarters in New York City.
To learn more about Huntington's disease and to get involved in HDSA, please visit www.hdsa.org/npaf or call 1-800-345-HDSA.
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