Thursday, August 19, 2010

The Fork in the Road

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 direction they’re going?

Since those days in LA, I met my wife, was married, had three beautiful children, and headed off onto the freeway toward a normal life. On November 18, 2009 we crashed full speed into that fork in the road. We were not driving. We were sitting in the Muscular Neurology office at Children’s Hospital of Philadelphia. On that day we learned our youngest daughter Madeline was diagnosed with something called Pompe Disease. We had no idea what this was and were immediately humbled by the story coming from the doctors.

Over the following months, buoyed by the support from family and friends, we grew to better understand what we were facing and even regain a positive view on the future, even if it was to be different than we expected. We started a blog to share our story, built relationships with other Pompe patients and parents, and pondered how we could make a difference. That was until February 10, 2010 when that fork appeared again and we learned that our eldest daughter Emma was also diagnosed. Words could not express the shock and sadness we felt at that moment. 
Just as we were trying to understand and deal with the news, something happened that picked us up.

Three days after learning she had the Pompe Disease, Emma’s Facebook post changed to the line “Then you begin to make it better” from The Beatles song Hey Jude. While Donna and I were still trying to put one foot in front of the other, Emma was ready to fight. Looking back, I shouldn't have been surprised by her strength and conviction, but reading the post still brought tears of joy to my eyes.

In August 2010 are we back on that freeway speeding away toward a normal life? No. We made the choice to take that unpaved fork in the road and embark on our Pompe journey with positive hearts and a fighting spirit. To our surprise, that car of ours has become a bus filled with members from the Pompe community, CHOP, Genzyme, and a support network of family and friends which continues to amaze us.
So while we’ve learned that speeding to the destination may be valuable for some, we found the road less traveled, while frightening and hard on the soul, can be more beautiful than ever imagined. 

Thanks for sharing the ride with us,


  1. Every day I get in the queue (Too much, the Magic Bus)
    To get on the bus that takes me to you (Too much, the Magic Bus)
    I'm so nervous, I just sit and smile (Too much, the Magic Bus)
    Your house is only another mile (Too much, the Magic Bus)
    Thank you, driver, for getting me here (Too much, the Magic Bus)
    You'll be an inspector, have no fear (Too much, the Magic Bus)
    I don't want to cause no fuss (Too much, the Magic Bus)
    But can I buy your Magic Bus? (Too much, the Magic Bus)

  2. They knock me down
    And back up again
    You're in my blood
    I'm not a lonely man
    There's no load I can't hold
    The road's so rough this I know
    I'll be there when the light comes in
    Just tell 'em we're survivors

  3. Another turning point a fork stuck in the road
    Time grabs you by the wrist, directs you where to go
    So make the best of this test and don't ask why
    It's not a question, but a lesson learned in time
    It's something unpredictable but in the end it's right
    I hope you have the time of your life
    ......Green Day