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Leah visit
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27 July 2010
Our SMA friends Leah [SMA type-2] and Mom [Kate] were visiting family in Tennessee and stopped by to see us. I hung out quite a bit with them at the SMA Conference, but that's not where the relationship started. We first heard about them during our trip to Opry Mills in Nashville TN a long time ago. This was before we received her diagnosis and we were still puzzled regarding Nora's condition. Jaime's friend Tammy told us about her sister-in-law [Kate] who's child has this horrible disease called Spinal Muscular Atrophy. The symptoms were similar to Nora's and I remember thinking how terrible it sounded. We got back to the hotel room and looked up everything on SMA that night - but dismissed it all because it was genetic and nobody in our family had anything - so we thought there was no way Nora could have SMA. It's sad looking back now and to that story about Leah and thinking how horrible life was going to be for this little girl. Fast-forward to the present and ohhh what we would give to have Nora be just like Leah. What a cruel twist of fate that experience turned out to be.
Anyway, Leah and Nora hung out together and colored. Well Leah colored and Nora just fixated on Leah. Who wouldn't though? Leah is a precocious 4 and a half year old. She knows all about SMA too. I tried to explain that Nora was weaker and Leah corrected me saying "Nora has Type-1 SMA, I am a Type-2" Then I said "do you still eat with your mou--?" and Leah interrupted saying "no, I don't have a feeding button but if I don't keep using my pacifier to make me strong, they say I may have to someday". Leah is simply amazing. She has weakness in her hands and when she colored she just passed the markers to me to take the caps off for her. She knows her capabilities and isn't the least bit shy about asking for help. Like when she was eating Mac-n-cheese with an adult spoon and after 3 or 4 bites said "do you have a smaller spoon? I'm having a hard time with this one".
But to see Leah in her powerchair is to see the real Leah. She is so nimble with the controls especially since she only travels at Mach II speed. She is like a typical 4 year old. 30 seconds after putting her in the chair "where's Leah?" she just takes off and explores. When we went for a walk she sometimes stayed with us, but most of the time she was about 100 yards ahead of us - just being totally independent. Jaime and I love little Leah.
I also uploaded another video of Leah's visit on YouTube. See her in action



















