Meet McCoy

McCoy is seven years old and full of sunshine. He brings light and love everywhere he goes, and it’s clear that one of his missions in life is to demonstrate unconditional love. McCoy really enjoys bubbles, wagon rides in nature, and watching football…specifically his much-loved Chiefs. Most of all, he enjoys simply being with friends and family! Every morning McCoy wakes up with a smile so big that it brightens the complete darkness of the early hours. His determination and unwavering patience are an inspiration. 

McCoy was diagnosed with a rare genetic disorder called 1Q43-Q44 deletion syndrome at three months old. He is truly 1 in 300 million! What does this mean? Well, it means he unfortunately has been faced with living with many challenges including an Epilepsy disorder called Lennox Gastaut Syndrome, Complete Agenesis of his Corpus Callosum, Dysautonomia, GERD, Cortical Visual Impairment; as well as is non-ambulatory, non-verbal and is Globally delayed. 

Due to low muscle tone, McCoy is unable to sit upright on his own for a prolonged period. He is unable to walk or crawl and requires assistance from his family to move. McCoy’s parents applied to the Love Fund for an adjustable special needs chair.  The height of this high-low chair can be adjusted for eating, viewing his communication device, and sensory exploration. Having a chair that fits him well will allow McCoy to maintain good posture and tolerate being still and focused for longer periods of time. The specialty chair allows McCoy to sit at the table with the family during mealtimes. It also allows McCoy to sit upright for the hour and a half that he is being fed through his g-tube. The family is tremendously grateful to Love Fund supporters for this gift. In the first month it has already had a tremendous, positive impact on McCoy and caregivers.

“As McCoy grows, we are finding there is a need to have an appropriate chair where he can be physically supported and can be easily maneuvered for his parents to place him in the chair with ease and safety. This chair would be utilized for many years to support him while enjoying his g-tube fed meals with his family at the dinner table, be at the right level to engage in schoolwork/crafts/games, and most importantly be seated at the correct distance to utilize his Eye Gaze device. This would allow him to communicate with us more effortlessly as there needs to be a specific range between his eyes and his device. His current wheelchair is unfortunately too low for most tables, and he is too large to be seated in a highchair that still offers a safety belt.” Kenda, McCoy’s Mother