BENEFITING: MYTEAM TRIUMPH
Welcome to the Chariot for Evan fundraising page, hosted by Ainsley’s Angels.
With your generosity, we aim to have a brand new Freedom Push Chair delivered in early to mid-August to Evan’s house! This chair will allow him to compete in local road races with his Dad. As the father of a very special girl named Ainsley, the positive energy surrounding the start line, the togetherness of every member preparing to "roll with the wind", the fearlessness of the athletes, the normalcy of the family, and the love we all have for each other is a therapy like no other. I just know this is going to be a life changing event for this family.
Among the most rare diseases and syndromes known to man is a particular one so drastically affecting the 7th chromosome pair of human DNA it is hard to believe the carrier of such abnormality could live. But indeed there is life and Evan Michael Vaughn born May 13, 1997 in Conroe, Texas continually defies the odds. Evan’s parents knew 4 months into the pregnancy that something different was happening within their third child. At birth, their only son was a handsome fellow but it was apparent that one of several syndrome diagnoses would be applied. Two years later at the National Institutes of Health in Bethesda, Maryland confirmation of the following diagnosis was made: Greig Cephalopolysyndactaly Syndrome with Continuous Gene Deletion and CCM2 Deletion. The NIH medical team was astounded with the level of genetic deletion. Evan’s parents were in shock. Evan remained the happiest soul on earth even though the path of his life would be dotted with adversity.
This multi word diagnosis affects all aspects of Evan’s development, physical and intellectual. While he has spent some childhood years ambulating with a walker, he is considered a retroactive pedestrian. As Evan matures he will walk less and less eventually settling into a permanent wheelchair mode. There have been over 20 surgeries in 16 years of life, ranging from cardiovascular to orthopedic to respiratory in nature. The orthopedic surgeries all have one goal: not to create a lifelong walker, but to create a comfortable pain free life for Evan. Besides the extra toes and fingers Evan was born with, his legs were destined to grow abnormally. More than one hip and femur surgery has addressed the dislocating tendency of his hip joints and the unusual growth formation in his pelvis. These particular bone surgeries are marathon events for Evan requiring blood transfusions, multiple hospital stays and grueling physical therapy.
The toll has been great but anyone who knows Evan is blessed by his constant good nature. As a Special Olympian, he has gained a reputation as the boy who stops midway through a competition to wave and blow kisses at his adoring fans. Recently, Evan and his dad have taken to track and trail together. Evan keeps his thumbs up the longer his running dad can push him! The goal to obtain proper equipment for this duo is now becoming an action point. Evan has never required football uniforms or soccer equipment and he never will. The blessing for Evan is the wind in his face and good healthy competition when his dad runs with him. The blessing for the rest of the watching world is underscored by a spirit of joy in all things no matter what it takes to run the race ahead.
YES YOU CAN, donate 10, 20 or 50 dollars right now to ensure Evan can roll with the wind and experience the thrill of crossing a road race finish line!
Click the orange button in the upper right of this page or e-mail firstname.lastname@example.org for a link to make a donation using PayPay and/or for a mailing address should you prefer to donate by check. We will ensure all donations appear on this page as off-line donations.
Another way to help, is to spread the word of our message and efforts:
1. Click here, then click on the Born an Angel tab to purchase the children's book written by Ainsley’s 11-year old sister and donate it to a local elementary school library! Proceeds go to the Ainsley's Angels Foundation
2. Follow us on Instagram and Twitter: @ainsleys_angels
3. Like Briley’s book page us on Facebook: Born An Angel
Who is Ainsley?
Ainsley does not talk or walk; she does not play for fun; but she smiles, while out for a run. An inspiration to thousands, she is an amazing little girl with a smile that will light up any room. Shortly after being diagnosed with an extremely rare progressive genetic nerve disorder called Infantile Neuroaxonal Dystrophy (INAD), Ainsley completed the Surfer's Healing Virginia Beach 5K road race. Her first of many running-aided, wind-induced smiles took our family's collective breath away as she received her finisher's medal and became an official Team Hoyt Virginia Beach (THVB) ATHLETE! Inspired by Dick and Rick Hoyt, and the only running team authorized by the Hoyt's to use their name, THVB provided Ainsley's family with a therapeutic means to fight the devastation associated with learning and trying to live with the fact that your child has a terminal illness. The positive energy surrounding the start line, the children smiling from ear to ear, the togetherness of every member preparing to "roll with the wind", the fearlessness of the athletes, the normalcy of the family, and the love we all have for each other is a therapy like no other. In an effort to spread this amazing experience to as many people as possible, Ainsley's Angels aims to see other families experience what the Hoyt's have experienced nearly 1100 times and what we have experienced nearly 50 times (so far). We aim to ensure others can "roll with the wind" and live up to the philosophy of, "Yes You Can."
THANK YOU FOR YOUR SUPPORT!