Make-A-Wish Impacting Lives Throughout New Jersey

Steve Adubato talks with Tom Weatherall, President & CEO, Make-A-Wish New Jersey, and Emily Pedersen, Make-A-Wish New Jersey Mom, about the impact the organization is making on the lives of many families. Emily shares her personal experience with Make-A-Wish New Jersey and how her daughter was granted the organization’s 1000th wish.

12/3/18 #2179

Excerpt:

"We are pleased to welcome, back by popular demand, our good friend, Tom Weatherall, who is President and CEO of Make-A-Wish New Jersey, and, for the first time, Emily Pedersen, who is a Make-A-Wish New Jersey wish mom. How you doing? I'm good. I'm good. Thank you for having me. This guy's good. He's great. He always brings in a good friend who has a compelling, powerful story. Klara is your daughter? Klara is my daughter. Eight years old? Yes. What makes her...? Who is she? And what makes her so great? Well, Klara is a younger sister to Lily. She's an amazing little girl. She's smart, she's funny, she's got a great sense of humor. She really loves life. She plays the violin, she's done cheerleading, and dance... We're looking at pictures. I'm sorry, cheerleading and dance? Yeah. Like she's just getting ready to start hip-hop. [laughter] Oh no, she... she... And she... hold on, she does the stats for the soccer team? Stats for the soccer team. And she has done horseback riding for about four years. So therapeutic horseback riding. She was born with some real challenges... a rare muscular disease? Yeah. She has RYR1-related myopathy. Pretty rare. It is considered an orphan disease muscle disorder. How does it impact her? Every way. It affects every aspect of her life, and it involves the muscles that move your body. So it affects her arm muscles, her leg muscles, her chewing muscles, everything. So she needs help to do pretty much everything. She has a wheelchair. She can't stand. She needs some help to get dressed. She needs help with eating. She has a feeding tube for supplemental food. Yeah. She needs help getting toys down. She needs help taking a shower. You know. Every aspect of her life is affected by the muscle disorder. And she had a wish? Yes Steve. She had a wish. And... That's what you guys do? Yeah, this is what we do Steve. You know... you know, you've been such a dear friend of ours. We don't know that we have a bigger ambassador, or a champion for our mission with the platform you give us. No it's those of us in public broadcasting, I just bring you on and you share the story and people do what they choose to do after. Which is a good thing. Go ahead. We're always grateful Steve. And so Klara's wish was brought to us, and she wished for... listening to her mom Emily describe what were her limitations then, and they live near this beautiful park. It's really a preserve..."