A few years ago, after our youngest son was diagnosed with a rare chromosome disorder - 13q deletion, we stumbled upon an organization based out of Florida, Chromodisorder.org. An organization dedicated to being the support for families who have children with rare chromosome disorders. We also discovered the second week of June tends to be Rare Chromosome Disorder Awareness Week - Internationally! We immediately thought of sharing Asher's story and combining it with our family's love for being active. Hence the start of Active4Asher.
To back track a little for those new to following us on Instagram or even this blog, our youngest son, Asher who this event is named was officially diagnosed at 1 years old after they tried so, so many other tests first with 13q deletion. Boring stuff: chromosomes have a short arm (p) and a long arm (q). Asher has a portion of his long arm gone. Here is the kicker, there really aren't enough known people in the world with his specific deletion. No one could and can tell us what to expect. Scientific literature has perhaps 250 cases suspected, 190 actually "studied". Most children struggle with communication and walking. There is only a small percentage that end up being able to do both. Most have significant global developmental delays. This is Asher. He sat up for the first time (by himself) at age 2, he crawled (kind hopped on his knees) at age 3 and just this year, started walking. All of this with tons of therapy. Yet, it lead us to want to share our journey, share his story and to inspire and encourage others to be understanding and inclusive.
This past Saturday marked the 3rd year for Active4Asher and our hearts are full! This year, not only did we receive sweet and loving messages from people, tagged in so many photos of people getting out and being active, but our in person event had people who didn't know each other prior introduce themselves to each other. This was the best. Friendship, acceptance, support and genuine caring is all anybody wants. Active4Asher is as much about spreading that message as it is about sharing rare chromosome awareness.
A quick story: Recently, while visiting my mother in the hospital, her nurse walks in. I introduce myself and she quickly remarks, "oh you're the daughter with 4 boys!" I say yes and smile because aside from "the daughter who is a runner", having 4 boys is my label when my mom talks about me. She asks to see pictures, so I oblige and show her a photo of all 4 and then a photo of each boy from the camera roll on my phone. She has a kind observation to make about each boy., but when she gets to Asher, she says "He's the one with a chromosome disorder? He looks so normal though" Now, I know she meant no harm and I wasn't mad, but her reaction is kind of the perfect reason why we want to share our message. Asher has his challenges, a lot as a matter of fact, he might be 4, but in some developmental areas he is 6 months, in others he is 12-18 months. However, he does look like a "typical" child so when he screams, has a complete meltdown, hurts his siblings or us, or hits his head the judgment can sometimes be horrible. Our goal is to spread the message to look past what we think people should be and simply get to know them, to truly be inclusive and supportive, to put aside our biases and labels. This past Saturday we felt the love, support and inspiration for all of you. From the bottom of our hearts we thank you.