Maddie's Mission

Yesterday we received a letter from our insurance company detailing the costs for last month's Lumizyme treatments.  As I looked down at the amount we owe now that we've met our deductible, I reached for my insurance card, grabbed Maddie's hand, and became Grandpa Joe from Willy Wonka and the Chocolate Factory dancing and singing away to... I never thought my life could be Anything but catastrophe But suddenly I begin to see A bit of good luck for me 'Cause I've got a golden ticket I've got a golden twinkle in my eye I never had a chance to shine Never a happy song to sing But suddenly half the world is mine What an amazing thing 'Cause I've got a golden ticket I've got a golden sun up in the sky And then I started to wonder what the insurance claims specialist must think when they receive yet another invoice from CHOP for those darn Crowley girls.  I imagine it goes something like this... You never give me your money You only...

The AMDA publishes a regular newsletter and contacted us for an article about our experience. Many of you already know the story, but I thought you might be interested. As a younger man I drove the finely paved Los Angeles freeways with ease. Like millions of others, I merged in and out of traffic, easily transferring from one on-ramp to the next at a speed only matched by the pace of city life. Everyone around seemed to follow the same path, eyes on the road, never stop to look around, and never look back. 
 
 Every so often I would notice a strange sight at a fork in the road. A car would have crashed right into the divider between one freeway and another. Why did this happen? Was it because the person was not paying attention, were not sure which direction to go, or were they frozen when forced to make a choice they weren’t prepared for? Whatever the reason I admit I always drove by with a bit of confusion and a bit of humor. After all, doesn’t everyone know which directi...

All the leaves are brown, And the sky is grey, I've been for a walk, On a winter's day I'd be safe and warm, If I was in L.A., California Dreamin' On such a winter's day Last Sunday, Emma boarded a plane to Sunny California with my sister and niece. She is having a great time enjoying the So Cal beaches, great Mexican food, San Diego, shopping, Los Angeles, In-N-Out Burger, Santa Barbara, and most important...family. On Tuesday she'll take her first flight alone and be home just in time for treatment. On August 1st last year we had just returned home from two great weeks in California topped off by my nephew's wedding in Santa Barbara. To remember the trip I sat down with Donna and created a video to share some great photos from our vacation. This was before we knew anything about muscle biopsies, genetic testing, Pompe disease, or Myozyme. It was also before this blog, our wonderful doctors, and the love and support of many friends. Yes...

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...