Ethen Huntley, son of Kevin Huntley and Maddee Terrell, is an 11-year-old 6th grader at Limestone Middle School.
Ethen was diagnosed at the age of 4 with Duchenne Muscular Dystrophy. Duchenne Muscular Dystrophy, or DMD, is a genetic disease caused by a gene on the X chromosome that mothers can pass on to their sons.
The gene affects a protein called dystrophin which is required for muscles to function normally. It is a muscle wasting fatal disease. Most boys live into their 20’s. This genetic disease affects one in 3,500 boys.
Ethen’s grandmother and caretaker, Lisa Thomas Huntley shares, “The Dystrophy gene inside the DNA chain doesn't allow Dystrophin to be made, which causes all muscle organs to turn to fat. As the disease progresses, Ethen will lose the ability to walk, then the use of his arms and hands. As he gets older, the heart and lungs fail. There is no cure for this disease.”
She continues, “Ethen's legs are the most affected at the moment. He walks on his toes because he is unable to put his feet flat affecting his walking, running, jumping, getting up off the floor, use of stairs, and getting in and out of vehicles. As he grows into a young man, transporting him becomes much more difficult.”
Ethen is in need of a wheelchair van, which can cost up to $80,000, to make transportation easier and safer for him. Therefore, a benefit has been planned to assist with the cost of the van as well as other medical equipment expenses.
The EthensArmy Benefit will take place on Saturday, October 9 from 1-7 PM at the Bradley Bourbonnais Sportsmen's Club, located at 2672 Chippewa Dr, in Bourbonnais.
Tickets are $10 each, which includes entry to event, a raffle, food, and music organized by Todd Hazelrigg. Kid Zone inflatables will also be there for the children. In addition, there will be baskets, a silent auction, and a 50/50 raffle during the event. Call 815-953-1882 to purchase tickets.
Anyone who would like to help with donations of baskets or silent auction items should contact: LisaThomasHuntley on Facebook or email Beachdreamin865@aol.com.
If you prefer not to attend the event, but would still like to provide a monetary donation, checks, made out to Micky Huntley, may be sent to: 6055 W. 3000 S. Rd., Kankakee, IL 60901.
Information regarding Duchenne Muscular Dystrophy was taken from: https://www.hopkinsmedicine.org/health/conditions-and-diseases/duchenne-muscular-dystrophy