Little Audrey Jane Capps, of Devine, has sweet chubby cheeks, blue eyes, strawberry blonde hair, and a smile with a light inside. Her light shines brightest on the darkest of days. Days like this past July when she was diagnosed with a cruel disease that has no known cure (yet). On that day, her family cried all around her. Audrey, on the other hand, smiled and laughed and danced, telling her tearful grandmother “We got this!” with a thumbs up mid-dance.
You’re invited to join in a day of family fun at Devine Acres Farm, and morning fun run/walk on May 14, 2022 in honor of little Audrey Jane. Audrey just celebrated her 4th birthday, and she is battling a rare disease called Ataxia-Telangiectstacia (A-T). The Capps/Calame crew and team “Audrey Jane’s Light” will be hosting this event as a fundraiser for the local family and for the A-T Children’s Project (ATCP), whose sole mission is to find a cure for Audrey and all A-T warriors!
The event will kick off with a Some Run/Walk at 9 am. Then, purchase your tickets for a day full of family fun activities at Devine Acres Farm from 10 a.m. to 5 p.m., and a barbecue plate sale and with live music by The Jeremy Richard’s Band that evening from 6p.m. to 10 p.m.
A-T is a neurodegenerative genetic disorder that typically impairs movement and coordination, weakens the immune system, and causes an increased risk for cancer. A-T is rare (approx. 500 known cases in the U.S.) and often comes with many other physical and medical challenges. We have been told that kids with A-T typically need a wheelchair by the age of ten and that life expectancy is limited by the disorder due to the impaired immune system and risk for cancer. There is currently no cure for A-T. With your help, we are working to change that!!
Audrey’s mom and dad, Josh and Brittany Capps stated, “We have been to the Johns Hopkins A-T Clinic in Baltimore and we have a good team of doctors on our side locally as well.”
“We have been connected with the AT Children’s Project, a nonprofit formed/supported by families affected by A-T and they are doing everything they can to fund research and trials and find a cure. They have been a huge blessing these past few months.”
“We have learned that every child with A-T is so different in their individual symptoms and know of some who have lived into their 30s and even early 40s. Intellect is typically not affected which is a blessing. Only time will tell how this disorder will affect our baby girl.”
“Right now, she is a bit wobbly and off balance (she has been since she started walking at 15 months), but she is happy and smart and has a zeal for life like no other! “
“We have also been told that kids with A-T typically start losing physical abilities step by step between ages (4-8). We are in a race against time to find a cure for our Audrey Jane.”
“God has been with us every step of our journey so far, putting so many good people and resources in our path. God has also blessed us with the best family, friends, and community support we could ever ask for.”
“We will not let A-T defeat us, we will not let it suck the joy from our lives, and we will not give up hope! “
“God’s light shines brightly through our Audrey Jane and we have faith that he will lead us to a cure! And when he does, he will get all the glory!”
“That being said…we are excited to host this fundraiser in May to help raise funds for the research that is actively being done to find a cure.”
“In the meantime, we appreciate any prayers you can spare for our Audrey Jane and all the families affected by this terrible disorder, and the doctors working to find a cure. Please spread the word to anyone looking to support a good cause or anyone you know in the medical community. You never know what may spark the cure.”
“Thank you to everyone who has already reached out to us and that have been praying for us. We are eternally grateful for your love and support!”
All ticket sales from the event, Some Run registration, and corporate sponsorships, will go directly to ATCP’s search for the cure. Activities at the farm, the silent auction, and food/drink sales will go into a trust for Audrey to help pay for new potential treatments and/or needed medical equipment for Audrey that may come up.
Audrey is surrounded by a large and amazing team of family, friends, and community who are determined to change A-T through Audrey’s Light, including grandparents Ken and Debbie Capps, Tommy and KK Calame, great grandparents, and numerous aunts, uncles, siblings, and friends.
In the words of Audrey Jane, “we got this!”
Get your tickets for the fun day at Devine Acres or sign up for the race at:
www.atcp.org/AudreyJanesLight
By Kayleen Holder
Editor