Maddie's Mission

Hello all, I haven't spoken about fundraising in the blog before because I felt it was more important to focus on our life experiences since the girls' diagnosis. However, a unique opportunity has presented itself from some very special people and I wanted to share it with you. My nephews and nieces in San Diego are training to run a half marathon on August 15th. All funds will go directly to the AMDA, which is a great organization supporting the Pompe community. Please see my niece Meghan's letter below. If you are able to donate, please consider employer matching funds as a way to boost the impact of your donation. Either way, please keep them in your thoughts and continue to check the blog for updates on their success. Thank you. All for two and two for all! Matt ------------------------------- Dear Family and Friends, As most of you know, our two cousins have been diagnosed with Pompe Disease. Maddie and Emma are truly amazing individuals who live each day with j...

When I get older losing my hair, Many years from now, Will you still be sending me a valentine Birthday greetings bottle of wine? If I'd been out till quarter to three, Would you lock the door, Will you still need me, will you still feed me, When I'm sixty-four? Their names were B, Z, D, and E.  I don't recall their real names or if they were my great aunts, third cousin's sisters, or mother's brother's cousin's sisters.  Nor do I remember if they were widows or "old maids" like they used to say.  To a little guy, these details did not matter.  What I do remember is that they were kind and always had stories to tell. On occassion, my mom would take my brothers and I on the 30 minute drive down Rosecrans and over to Long Beach Blvd. for the type of visit that doesn't happen so much anymore.  You see, these were the days before iPhones, video games, email, Facebook, and - gasp - blogs!  This was when cartoon...

Help, I need somebody, Help, not just anybody, Help, you know I need someone, Help! When I was younger, so much younger than today, I never needed anybody's help in any way. But now these days are gone, I'm not so self assured, Now I find I've changed my mind and opened up the doors. Help me if you can, I'm feeling down And I do appreciate you being round. Help me, get my feet back on the ground, Won't you please, please help me? I've held this song in the background waiting for the right post because it carries a special message. It speaks of the realization of vulnerability and the willingness to open oneself for help. When you realize "my life has changed in oh so many ways", it's OK to "know that I just need you like, I've never done before." Thankfully for our family, many angels are here to help. This is the story of one great group of people. Last week we met with Dr. Barry Byrne and his research team at University of Flor...

The night before we moved from our Northern California home a friend who learned we were moving to the Northeast asked me a question.  "Do you know it snows there, even when you don't want it to?"  I laughed it off speaking instead about the beauty of the Northeast, my new job opportunity, and of course the cheesesteaks.  While I thought it was a humorous question at the time, I must admit I repeat it each winter as I gear up to clear the snow from the driveway.  Seven years after living on the east coast I've realized I have two favorite parts of a winter storm.  The first is watching a heavy snowfall where the snowflakes are so large and distinct you can reach out and touch the magic of winter.  The second is when that last bit of snow is washed away by a gentle spring storm clearing the way for warm, sunny days.  Sure there's all that other "stuff" in winter that's cool too, but when it comes to co...

I'm 15... for a moment caught in between 10 and 20 and I'm just dreamin' countin' the ways to where you are 15 there's still time for you time to buy and time to lose 15... there's never a wish better than this when you've only got a hundred years to live As a young man I remember that itchy feeling of freedom that comes upon you when you are no longer a child, but not quite an adult.  The time when the world is filled with wonder and every opportunity remains within reach.  For me, that feeling uniquely resides in the eyes of a 15 years old.  You've entered the new world of high school, and the thoughts of college, a job, and a mortgage seem so far away.  During this time many of us tried to find a place where we could dream of tomorrow be it in our rooms, at a beach, or a friend's house.    Emma resides in this wonderful age and has found her place of freedom behind the steering...

Take me out to the ball game, Take me out with the crowd. Buy me some peanuts and cracker jack, I don't care if I never get back, Let me root, root, root for the home team, If they don't win it's a shame. For it's one, two, three strikes, you're out, At the old ball game. I can’t recall if it was the smell of freshly cut grass or the unique sound made when a baseball meets a wood bat, but as we climbed the stairs onto the field it was clear that this was a day to remember. Like most boys my age in California, I never heard of lacrosse, rugby, or that crazy sport those Europeans call football. I played baseball. Whether it was an organized community game, a pickup game before school at St. Angela’s, Over the Line with my two brothers at the park, or the non-stop two-seam fastballs that hit the garage door over and over and over, I loved the game. As a young kid my heroes were Davey Lopes, Steve Garvey, and Ron Cey. I remember sitting in the stands above Ch...

Boy, you're going to carry that weight, Carry that weight a long time Boy, you're going to carry that weight Carry that weight a long time A recent blog comment from a dear friend got me thinking. The comment went like this: Hopefully, this family will see the people around them care in a way that they never even imagined people could care for them. A caring that was always there, but lost in the shuffle of every day life. Last Friday Maddie's 5th grade class attended Music in the Parks in Hershey, Pennsylvania. This is a competition between regional elementary, middle, and high school band and chorus groups which includes performances, an awards ceremony and a day at Hershey Amusement Park with all the rides and mini candy bars you desire. As with many school field trips, the day started early in preparation for the 1-1/2 hour bus trip to Hershey. By 1:30 the kids and parents were finished with in the park eating $10.00 hot dogs and standing in line for that ultima...