Arthur’s mom Bess shared this regarding his disability, “Art has a rare (so far four kiddos in the world have this) genetic mutation. He is our medical unicorn-complicated, uncharted, surprising one of a kind person! He has (but not limited to!) the following challenges: mobility challenges (motor apraxia), vision issues (Cortical Visual Impairment), intellectual disability (brain disorder which involves underdevelopment of his white matter, with decreased brain volume) and well, he is not saying much (only a few words), he is five years old.”
Bess continues……”But I came across this meme that really hit it on the head for me- just because someone is nonverbal does not necessarily mean that they don’t have anything to say (thank you random instagrammer!).”
“Art has thoughts, ideas, and opinions. He just has a hard time getting them all out. It could be really easy to just assume that there’s nothing going on there. Arthur has two brothers and a newborn sister. When his brothers get home from their day, I can ask them the usual questions that parents ask their kids (how was your day, who did you play with, etc etc) and normally am bombarded with a play by play. Each day I look over to Art and he greets me with those bright blue eyes, that smile and the occasional nod. And as I peer into his baby blues, I can’t help but see a tinge of sadness. He has a communications device on loan from school and it’s been fabulous. Like such a big deal. You know the Disney movie The Little Mermaid? Remember that scene when Ariel regained her voice at the very end and was finally able to tell Ursula to kick rocks and announce her love for Eric? That’s kind of how this device has been for Arthur. But it’s not ours. We have gone around and around with insurance. It’s been an exhausting marathon that no one should have to run, especially when it yields no results. Arthur needs this, his classmates and teachers need this for him, his siblings need this for him. Please help make this possible. Thank you in advance.”
What Arthur needs is the NovaChat 10 Plus – Standard Model, Active Wrap in Green, Ivona Speech Voices, SymbolStix symbol set. The price is too high (just over $5,000) for the family to buy out of pocket – but it’s not to much for generous Variety KC donors! You can’t put a price on giving a child a voice and Arthur will have his! If Arthur’s story touched your heart, please help another child with a similar need – donate any amount at www.varietykc.org/donate Thank you!
