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A Personal Story of Children's Understanding of Spinal Muscular Atrophy

Ron and Debbie describe what 8 year old Dylan and his 5 year old sister know about his SMA Originally created for Learn About Spinal Muscular Atrophy ( ) TRANSCRIPT: Ron: Dylan knows a lot about SMA and that's the reason why he wanted to go visit President Barack Obama to tell him about SMA. So he's aware, fully aware of what his situation is and what his affliction is and he wants to make sure that people know. When we did the Make A Wish Foundation, his first request was to see President Obama... So how did you get to meet president? Dylan: It was my Make a wish. Ron: How was it visiting the President? Dylan: AWESOME! Debbie: What was your favorite part of about visiting president Obama? Dylan: Shaking his hand, shaking President Obama's hand. Debbie: That was the best? Shaking his hand? Dylan: U-huh! Debbie: And I think too, we like to be upfront and honest with him. I guess I never felt the need not to tell him to give him any false expectations. So it's, you know, this is what you have going on and this is why you have a trach and this is why you can't walk. And he kind of -- I think he really understands that -- Ron: He said he's accepted. Debbie: And then when we had Heather, she does not have SMA. He really never asked us any questions as to why she could -- why can she walk and I can't, why can she eat and I can't. I always use this as an example, a couple of years ago, we were on vacation and my husband was golfing and Arthur, his nurse, and I were by the pool with him. It's a job to take him in the pool because we both have to lift him on a special raft that we have. So I was a little tired from swimming with him so we took a little bit of a break. He said, I want to go back in the pool and I said, daddy will be here in five minutes, he just called me so you just have to wait five minutes. And he said, well, I'm going to get up and go on the pool myself. So I said to him, you're going to get up the pool and go by yourself? And he goes, no mom, I was just joking, of course not, I can't walk. He's like so I have to wait for daddy. So he gets it. Ron: Yeah. And -- Debbie: And -- Ron: And Heather said that to him one time. Remember -- Debbie: Yeah. Ron: You know, Dylan when you can get up and walk and he just turned around and said, Heather, I'm never going to walk. Debbie: Heather, I'm never going to get up and walk. This is how I am, I move in my power chair.
Length: 02:35


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