‘Race for Violet’ to Benefit Girl w/ Rare Chromosome Condition
By Jacob Mathias
An upcoming 5K walk/run is set to benefit a local 5-year-old girl with a rare chromosomal deletion.
The second Race for Violet Family Fun 5K and silent auction is scheduled for August 5. The 5K and auction will benefit Violet Thompson, a 5-year-old girl with an extremely rare chromosomal deletion.
Thompson was born without her 7q33q36 chromosome, a condition with only 15 documented cases. Due the rarity of her condition, there is no name for it.
As a result of the chromosomal deletion, Violet suffers from a number of developmental delays. Natasha Thompson, Violet’s mother, said her daughter has low muscle tone: she’s not able to walk or talk and she’s fed with a feeding tube in her stomach.
“Most five-year-olds are running and talking and learning and playing and hitting balls — she can’t do all those things,” said Thompson. “She needs assistive devices to do everything and depends on people around her to help meet her needs.”
Violet is also missing part of her right arm and her corpus callosum, a band of nerves that connect the two hemispheres of the brain. Luckily for Violet, she is able to meet all her medical needs between Stevens Point and Marshfield clinics and hospitals. As she has grown and strengthened, Violet’s time between meeting various doctors has increased.
“Medically she’s better than she once was,” said Thompson. “Developmentally, she’s making gains — for her.”
Thompson said while her daughter can’t speak, she has her own interests and personality. Violet enjoys music, especially when performed on the violin, playing in water and swinging on a swing set. She said she hopes to soon buy an adaptive swing for Violet so she can play more often.
“She’s a funny little girl,” said Thompson. “She definitely knows what’s going on and makes her needs known…She has personality for sure.”
Violet is set to begin kindergarten at McKinley Elementary School in the fall.
Registration for the 5K begins at 8 AM and the walk/run starts at 9 AM at the St. Paul’s Lutheran Church. Registration for adults is $25 with a t-shirt, or $20 without. Children ages 6 to 15 years old are $15 with a shirt and $10 without. Children under 5 years old are free.
Food will be available from 9:30 AM to 11:30 PM.
The silent auction will be open from 7:30 AM to 11:30 AM. This benefit will assist with financial support for the equipment and transportation costs for the Thompson family.
“Unfortunately the cost of special needs equipment are rarely covered by insurance,” said Thompson. “Another big item we want to get this year is a swing…that’s still like $300 with all the straps and safety equipment that she needs.”