Monday, August 22, 2016

Meet Laya & our Local news appearance!

We recently uploaded a Meet Laya video to YouTube. At the beginning of the video is a recording of her singing "Families can be together Forever." She sang that at my sister Ashley's wedding and I'm so glad we recorded it. She was only just turning 6 years old at the time.

Laya was super cute about doing the video, she picked out her outfit herself and told me exactly how she wanted her hair. The night before she asked me to write down the questions I planned to ask her, so she could plan out her answers. Then she spent a long time writing down all about GM1. I only kept a portion of what she had to say :) I had no idea what she was going to say until we filmed it. So much fun!

Also, we were on the Local News! It was a great experience. I think it helped get the message out to more people, which is fantastic. About a month ago I sent the Sweet Angels video in a Facebook message to Barbara Grijalva. Luckily she responded! She watched the video and said that she would love to do the story. She just had to work for a slot and get her superiors on board. They were so gracious about the whole thing. Here is the link to the story.  Tucson News Now Story

Wednesday, August 3, 2016

"Interview" with Eli

Eli is a very social guy, he really likes to be rocked in the rocking chair. He loves to do anything with his Mommy, Daddy, brother or sister. He does not like to be left alone to entertain himself. That is not very fun for him, he get's super bored unless he is interacting with someone! 

He used to sing at the top of his lungs, really high! (He imitates me almost exactly in this video) 

He used to dance like crazy! He still likes to dance....he's a really good dancer :) (Check out his moves above)

On Eli's 5th birthday we got a trampoline for the kids, he can't really jump on it anymore, but he used to love to get on it and bounce on his knees. Super fun! 

His favorite toy when he was younger (ages 18 months - 4 years old) was this baby doll stroller. He would push it around for hours, and as he started losing his ability to walk, it helped keep him stable for a while. 

Eli is a hard worker. Whenever he would fall down, he'd get right back up and keep trying. (We'd always say that if we were put in his shoes for a day, we'd be crying. But he is not a complainer. He just does his best.) 

We are SO lucky to have him!