We are so excited to be one of the chosen families for the Muscular Dystrophy Association (MDA) "Jerry Lewis" telethon this year over Labor Day weekend. We accepted the honor on Ryan's behalf, knowing that we will carry on his legacy and raise awareness about SMA in the process. When we accepted the invitation, we had no idea how involved this whole process would be. A few days later, I got a phone call saying Mike Bush, the television anchor for Channel 5 news would be coming to our home to do an interview prior to the telethon. That was my first clue that this was something big, or at least big to me.
We were scheduled to do the interview next week, but then, out of the blue last night.... I got a phone call. "Hi, Mike Bush from Channel 5 news, how are you?" He called to say that he couldn't interview us next week and needed to come the next day (today) and asked if that would be okay? My mind went racing, thinking I had more time to prepare as being interviewed for something like this, I wanted to have my thoughts clear to say what I wanted to say. (I also wanted my house clean, so we frantically dusted and cleaned up last night. Chris thought I was crazy, but today when they filmed in EVERY room of our home, I know he was thankful that I am a cleaning machine).
So, we had a busy day today, Charlotte had OT this morning, then a Dr. appointment at St. John's Mercy at 1:00 PM and we had to be back home to do the interview by 2:45PM! Somehow, we managed to get home with enough time to get Charlotte settled down for a nap and for me to put my feet up for just a minute. I was a little nervous for the interview and so was Chris, but honestly, I could talk for hours about our children. When I began talking, the words came freely. I was surprised, however, that he wanted to ask questions all the way back to Charlotte. Wow! He wanted to know it all, and there is a lot to know. After my interview, Chris jumped in the "hot seat" and Mike was here about 1 1/2 hours. ** He was here so long, he didn't make it to the set in time to anchor the 5 o'clock news... he didn't come on until 6. Woops.
After Mike left, the camera man, Tom, spent time getting footage of our family and some of the pictures around the house. I don't want to give too much away, but he was here until 6:45 PM and I am really anxious to see what they put together.
They will be televising the profiled families, one each evening, the week before Labor Day, to work up to the event. They will let us know exactly what evening our family will be featured and we will share that with all of you so you can tune in. Hopefully it will be online for those of you who are out of town. Then, starting Sunday night, they will begin some of the televising for the MDA telethon, and it will start back up again Monday morning for Labor Day. The telethon is held at Grant's Farm and we will also be doing a "face interview" on Labor Day for the telethon.
We are honored to be doing this for Ryan and to have the opportunity to share his story with so many families. Hopefully we inspire others to give to the Muscular Dystrophy Association in which SMA falls under the umbrella of neuro-degenerative diseases similar to muscular dystrophy. The MDA helps many families just like ours.
We also wanted to share with you another article that Danielle Smith wrote about Ryan on MomItForward.com. Here is the link. http://momitforward.com/using-faith-to-conquer-fears