In 2014, Kinley was a completely healthy and normal 5 year old. In September of that year, like kids do, she got a virus, enterovirus to be exact. It started with a headache, then she didn’t want to eat. Not long after that she couldn’t hold her head up, so off to Children’s of Alabama they went. However; unlike other most kids, Kinley developed acute flaccid myelitis (AFM) leaving her a quadriplegic.
AFM is a rare, but serious nerve condition that occurs mostly in children and is oddly similar to polio. This illness attacks the spinal cord and the nerves that go to the muscles. It typically causes the loss of use of the arms and legs, and in even more rare cases can also involve the muscles used for breathing, neck and belly muscles. Since 2014, there have been less than 700 cases nationwide. Kinley is one of those cases. And because Kinley is extra, she has the rare form of the rare illness.
There is currently no established treatment or medication for AFM, just supportive care. Physical and occupational therapies are extremely important to help kids regain or improve muscle movement. Although it comes on abruptly, AFM tends to last a long time. In some cases, symptoms improve, but for others the weakness or paralysis is permanent. There is no way to predict which patients will improve and which ones will not.
Kinley received a tracheostomy and g-tube on October 6th, 2014 and a few weeks later turned 6 years old. Her mom, Kim, completed home vent training in January, 2015 and was able to get Kinley home, where she belongs. It’s hard to imagine being totally normal and healthy one day, and unable to move or breathe on your on the next, but that is Kinley’s reality. And she has taken it all in stride. It’s impossible not to love this kid once you meet her. She has the sweetest smile, and the kindest disposition.
She can talk, even while on her ventilator, and if Kinley has something to say, believe me you’ll know it. She strengthens her muscles in her stander, and has had periods of time when she could off of the ventilator.
In 2020 at 11 years old she accomplished something that no other kids I know have, she wrote a book about horses. And not only wrote an entire book, but is a published author for Katelyn’s Horseback Adventures which I’m dropping the amazon link to purchase. Buy Kinley’s book!
2020 also brought on more leaps and bounds for Kinley. In August of that year, after seven long years of waiting and smelling everyone else’s food, she got to take her first bite of real food! The amount of muscles and muscle control it takes to chew and swallow food is something I think we all take for granted. Her mom Kim also started coming up with creative ways to work on neck control with her, like painting while she holds the paintbrush with her mouth. She can also paint the most amazing works of art with her foot. This kid is so artistically gifted, words can’t quite explain. She can also play the piano via her tablet with her toes.
Give this girl an obstacle, and she will show you how to not only go around it, but excel at doing it. She now has about 90% use of her right leg. She texts, plays video games, paints, writes, and does schoolwork all with her foot. And faster than most people can with their hands. Oh and did I mention, she’s a star student?
Kinley is now 14 years old, still has a love of horses, art, and video games. She continues to make progress everyday, no matter how big or small, with AFM, progress is progress.
I asked Kinley if she could tell anyone else dealing with AFM anything, what would she tell them. Kinley said “Don’t give up, even though it may seem slow and hopeless, good results will come with time and hard work.” I just can’t express how proud I am of this kid and all of her progress and accomplishments.