This Friday, August 16, you and the rest of the Dallas community can enjoy brew and homemade barbecue for a special cause. Beer Me A Cure will be hosted by Matt and Rachel Clarke at the Community Beer Company from 6 p.m. to 10 p.m. in honor and support of families coping with Angelman Syndrome, a genetic disorder that affects the nervous system. Matt and Rachel are the parents of Avery, a 3.5-year-old explosion of joy you’d never know struggled to complete daily activities like eating, walking and even sleeping.
I had a few moments to chat with Matt. Check out his family’s story below, and we’ll see you Friday!
Tell us a little bit about Avery. What types of things does she enjoy, and who does she remind you of?
She loves TV and movies, especially with strong female characters who sing (Moana, Trolls). She enjoys dancing to music and also making huge messes. Her favorite is grabbing cups of water off tables. She LOVES water. Hoses, pools, sinks, dog bowls, baths/showers, and toilets. If it splashes, she’s there. She reminds me of a honey badger. Or a trash Panda, aka raccoon. She’s clever and fast.
What does AS mean for Avery’s every day life?
Avery is a glitter bomb of joy. She rarely cries or is upset because her brain doesn’t make the chemicals it needs to express pain or sadness. If she’s crying, it’s probably bad. So we have to be with her every moment she’s awake. She doesn’t understand boundaries or danger, and since she’s constantly moving, we are too. She goes to therapy 4-5 times per week for occupational therapy, physical therapy, speech therapy, and feeding therapy. Her body works against her brain much of the time so moving, eating, sleeping, etc. are difficult or ineffective for her. Avery’s everyday life means we are all exhausted by the end of the day.
Where does your family find comfort, joy, and support in moments that are most difficult?
We have an amazing community of support with other families who have kids with AS. They “get it” in ways no one else could ever. We laugh and cry and struggle and drink and send each other’s family’s money for dinner when we or they are hospitalized. Personally, we find comfort in knowing that the Lord provides for us, and part of how He does that is through our friends and family. He has made our friends into family.
What will the Community Beer event support, and how can people continue to follow Avery’s journey?
The event hosted by Community Brewery simply raises money for FAST, the Foundation of Angelman Syndrome Therapeutics. It is one of the non-profit organizations pushing and partnering with world renowned geneticists and researchers to advance the cure and bring it to the children and families living with AS. The coolest thing is that a cure exists, so this money goes directly into the development of gene therapies and getting ready for human clinical trials, which are expected in the next 18 months. We haven’t created any specific pages or accounts for people to keep up with Avery. Our friends mostly keep up with us on social media, because our life isn’t very conducive to getting out like typical families might.
Visit cureangelman.org to learn more about AS and see how the AS community is pushing progress toward a cure. If you are interested in making a donation to help find a cure on behalf of Avery, please visit the Clarke’s fundraising page.
