Tuesday, October 8, 2013

What A Wonderful World

I see trees of green, red roses too
I see them bloom for me and you
And I think to myself, what a wonderful world

I see skies so blue and clouds of white
The bright blessed day, the dark sacred night
And I think to myself, what a wonderful world

In September 2010 I posted an update titled Heroes where I highlighted Emma's recognition of some amazing people she met early in her Pompe adventure. (See maddiesmission.blogspot.com/heroesSince that time we have met many others from doctors, to researchers, and fellow Pompe travelers.  I could probably write post after post about their importance, but today I will focus on just one.  Today I'd like to mention someone who continues to use his skills to give a voice to those who are sometimes forgotten.  By doing so, he has left a lasting impression on me.  And, by doing so, he has reminded the Crowleys that despite hardship and challenge, we truly live in a wonderful world.  

If you live in the Philadelphia area, you may already know Steve Highsmith as that newscaster on the local NBC affiliate PHL17 or as the guy who has hosted the Mummers Parade for over 20 years.  For those outside the area, I assure you he is that and so much more.  He is heavily involved in the community through all types of charity activities and has received high honors from his peers.  It is his passion for children with muscular dystrophy that brought us together and keeps us crossing paths.  That passion has driven him to donate his time at various events, be a regular at MDA summer camp, and lead the live showing of the Muscular Dystrophy Association (MDA) Annual fundraiser.    

We were first introduced to Steve three years ago when we were invited down to the TV station to meet some sponsors, other families, and TV personalities.  At our introduction we were struck by this man who spoke so strongly about the mission of the MDA and what it meant for the Philadelphia area.  He made us all welcome and was nice enough to allow Maddie backstage while they filmed.  Not surprisingly, Maddie wasted no time finding her way on TV with some other kids, answering questions and laughing away.  

We ran into Steve a few more times at different MDA events and exchanged emails. Last year Donna and Maddie were invited down to the station for his one hour public affairs show to speak about their experiences with Pompe.  Last summer Maddie and Emma were interviewed at MDA camp and a few months ago they were called again. This time Donna and the girls shared the stage with their good friends Liam and his mother Susan to discuss different perspectives on life with muscular dystrophy.  As expected, through it all, Steve kept it positive, supportive and inspiring.

Rather than share all the details from the interview, Steve was kind enough to let me share the 30 minute video here.  When you have some time to set aside I hope you check it out.  I must admit it is still a bit strange to watch my family on TV especially when they are sharing their challenge with such hope, laughter, and determination.  I hope you find the interview interesting, but most of all I hope you realize that while Steve could easily spend his time focusing on more popular subjects, he chooses to give a voice to kids and families with unique perspectives to share.  For this I applaud him.

Steve, thanks for all you do.  Thanks for using your talents to spread the word about muscular dystrophy, for volunteering for so many good causes in the Philly area, and for reminding our family that there are many, many heroes in our crazy world.  We are lucky to call this one, friend.

Because of you...

I think to myself, what a wonderful world
Yes, I think to myself, what a wonderful world

Credit to Louis Armstrong, "What A Wonderful World"

Please see the video below.  In case you have trouble viewing it on this site, you can also access it via YouTube.

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