Hark-ALS is helping Kennedy and her family with a handicapped accessible van.
Kennedy Arney is eight-years-old and is the youngest ever diagnosed by the National Institutes of Health with amyotrophic lateral sclerosis. Specifically, she has juvenile ALS, or ALS Type 4, a slow-progressing form of the disease which is the result of a genetic mutation not seen in any other members of her family. While ALS is rare, Kennedy's version is even more so, and she faces a lifetime of medical care to manage and treat her symptoms. She received her official diagnosis in March 2018 and has remained extremely positive in the face of a mountain of uncertainty. Kennedy is a happy and intelligent second-grader, and is at the top of her class in subjects including math and reading. Her sunny outlook is not often dimmed by her diagnosis, as to her the battles she faces are just her everyday life and she's not ever known anything else. Kennedy loves to sing, dance, play video games with her best friend, play with her cat, watch cartoons and everything else enjoyed by other eight-year-olds. However, she doesn't have the strength and stamina to do physical activities for long periods of time and has a wheelchair to use for things like taking walks with her family or going to the grocery store or the mall. Kennedy went on a Team Gleason adventure to Lake Tahoe in the fall of 2018, using her Quantum Rehab iLevel powerchair to tool around Nevada and California, always able to stay ahead of her family and challenge them to keep up. She walked her first 5K in Grand Rapids, Michigan in May 2018, shortly after her diagnosis, needing to take a rest in her chair and be pushed only briefly a few times. Kennedy spent the entire route trotting alongside retired Grand Rapids Police Officer Scott Bylsma, also an ALS warrior, as other officers pushed his chair and they became lifelong friends along the way. A few weeks later, Kennedy accomplished her dream of becoming a police officer when she was sworn in as an officer for the day for the Flag Day Parade in Three Oaks, Michigan by Three Oaks Police Chief Dennis Buller. He was joined by law enforcement officers from all over Berrien County including the sheriff's department and the FBI during the ceremony, and she escorted her BFF Zoe in the parade that afternoon. Kennedy says that one day event wasn't enough, and her sights are still set on becoming an officer when she grows up.
Hark-ALS is a recognized 501 c 3 charitable organization. All donations are tax deductible.If you prefer to mail a donation please send it to: Hark-ALS 5 Pirozzi La Hillsborough, NJ 08844