Saturday, March 28, 2009

Cure CMD Video

Edited to Add: the question I ask at the end of the video regarding why Jack can't talk, I don't really expect an answer to. I was just asked that if I could ask one thing of either the medical profession or scientists with regards to CMD what would it be. So, I just came up with the question I've wondered about for years. Susan, (Ainsley's mom) just shared with me information she's learned regarding how cerebellar anomalies may affect speech processing. The processing issue makes sense for Jack because he's not making a lot of progress on the eye-gaze system either. We've removed the physical barrier to communication by getting him the eye gaze system and he still has trouble "talking". I doubt Jack will ever communicate with me in the traditional sense. But, I can honestly say that I've never really felt like Jack and I aren't communicating. It's just a different kind of communication ... between souls.


Here is a video I put together at the request of Cure CMD. It's a video that addresses specific questions they wanted answers to and is being shared primarily with physicians and scientists who work in the field of congenital muscular dystrophy. It's not a feel good video, it's just an "It Is What It Is" video.


Rachel Marini said...

I loved the video, Ann. You did such a good job at articulating all the facts and the added pictures and videos showed that Jack is more than just his disease. I loved seeing the videos of Jack... who is the woman caring for him? Is that his nurse Kristi? Wonderful job. You are such an advocate.
sending love,

Susan said...

Ditto what Rachel said. Very nicely done Ann!

Ann said...

Thanks Rachel and Susan. Yes, the person in the video clip with Jack is his nurse Kristi. Mark was home and I asked him to get some video of Jack and Kristi for me. I thought he did a great job!

Anonymous said...

It's so honest and straightforward, and moving at the same time. I hope you get an answer to your question.
love ya-

worthy said...

Ann, that was a wonderful video and it really shows Jack as an individual, not a diagnosis. well done, you did an amazing job!

shaffersouth said...

I think it's great. I'm not sure what question to pose either, so I haven't contributed as yet.
It's very moving. You have a knack for this!

Dana said...

Good job ANN! I loved seeing him at the end without his glasses. You could SEE that he understands and tries to communicate in his own way. What a sweet boy.

Cindy said...

That come out great Ann. Oh, so that's the famous Kristi:-)