Wednesday, September 22, 2010

Raising Awareness in Central Florida

I always say that while the circumstances aren't what we imagined with our family, we have met some amazing people throughout this journey with Nathan and I wouldn't want to trade meeting those special people for anything! The doctors, nurses and therapists that take care of Nathan on a regular basis all have places in our hearts forever...they are indeed a big part of our life for now on. Another group of people we would not have ever had the privilege of meeting if it hadn't been for mito are the parents of other children affected with this disease.

(Jennifer in front of our UMDF booth at the Rays game...she's my good friend and counterpart for the UMDF Central Florida Mito Group...)
We have had the wonderful privilege to meet many families experiencing the same life from a medical standpoint as our own...friendships have formed that will be life-long. Our UMDF Central Florida Group is a fairly new group...we've been meeting and participating in fund raisers and awareness activities for a little over a year, but we are becoming a very close group. I love that. Jump starting mitochondrial disease awareness week, the Tampa Bay Rays agreed to allow the UMDF to be showcased in the Community Corner spotlight for the Sunday afternoon game against the Angels. They even allowed the kids (Nate showed up a bit late and was cranky anyway) affected with mito to meet a couple of baseball players on the field before the game. Rocco Baldelli (shown in the second picture below) was so gracious to come down and talk with the kids some as well, as he knows fairly well the importance of such awareness for this disease.
All in all, I believe we had 85-90 participants in our awareness activity this year, which is loads more than we expected would come. It was a wonderful day, and even though the Rays lost, much fun was had by all. Thanks again to the Rays for allowing us to help spread awareness of mito to others in Florida.


All the Marletts on September 22, 2010 at 9:16 PM said...

Hey Amber, I recognized Jamie in one of your pictures. He and his Mom are very involved with the local mito chapter in our area. I have the pleasure of serving on the board with them.

My husband and son are at the Phillies game tonight for mito night. I'm sure Jamie and his family are there too, as they are big Phillies fans.

Thanks for sharing your mito/family life with us, it helps to know that we are not alone!

Nicole Marlett

Sarah on September 23, 2010 at 4:05 AM said...

That is SO COOL that you got to meet with other families and that the Rays were willing to come out and help! Looks like the day was great. So sad that nathan was having a bad day :(

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