“With Love, with patience and with faith, she’ll make her way…” –Singer Natalie Merchant, from the song “Wonder,” 1995
On December 16, 1996, my parents received the greatest gift of their lives (or so I tell them), a beautiful baby girl they named Megan Kathryn Crowley. Or to you (the reader), the author of this blog… no, I do not suffer from any lack of self-confidence.
When I was about 15 months of age, my parents noticed something was dramatically wrong with me (physically). I was not reaching the typical fifteen-month-old milestones. Usually, an average fifteen-month-old is walking, or at the very least pulling themselves up on furniture, however, I was doing none of that. My parents were starting to get worried, so they began to take me to various specialists. On March 13th, they got the news they hoped they never had to hear. Their baby girl had a rare genetic neuromuscular disease called Pompe. During this time the doctors told my parents that there was no treatment, not even a cure, they told my parents to go home to enjoy the time they have with me. The doctors also told my parents that I was going to die. My parents were devastated. My little brother, Patrick, got diagnosed with Pompe as well at three months of age.
My dad quit his stable job with health insurance and worked tirelessly for 3.5 years to find a treatment. That’s a long story, and it’s not about me, so I’m just going to skip over that part to the happy part. Finally, on Christmas Eve 2002, my parents got a letter from a Dr. Debra Day receiving the best Christmas present they could ever ask for. St. Peter’s Hospital, a Catholic hospital in New Jersey, would accept us into a clinical study for this experimental life-saving new medicine. Patrick and I received our very first dose of treatment on January 9, 2003. My whole family was there to watch my mom push Patrick’s “start” button, and my dad push my “start” button on the infusions. Throughout this whole process, I always told my dad that I wanted my medicine to be pink. When I looked up at the IV pole on that cold January day and saw that it was not pink, I told my dad, “Daddy; it’s not pink.” He responded to me, “No, honey, it’s a whole lot better than pink.”
And the medicine did work for a time. I began to brush my teeth on my own, raise my hand all the way in class, and even sit up on my own. But then within a year after I received my first treatment, I started to plateau and eventually regress. Now I cannot do anything I mentioned above, but what I can do outweighs all of that. I can smile, have a good time, laugh, and most importantly live!
Today I am still smiling, having a good time, laughing, and most importantly living as a college junior at the University of Notre Dame!
So yes, with love, patience, and faith I have made my way through 20 years on this earth. My journey has been one of hope, strength, and joy. This is my blog about my life, family, nurses, school, Pompe, and really anything. Here is my journey through life despite Pompe, and welcome to it…let’s go for a ride, together!