Guest blog post by Julie Krcmaric
In mid-March, I received a message from a high school friend. We had lost touch over the years but recently reconnected when both our children were diagnosed with rare disorders, throwing us both into the unknown. Her message read that the Liberty Science Center was hosting a free Rare Disease Event for rare disease patients and their families. I knew the stars would have to align to get Emmeline, my 3 year old daughter with multiple different rare disorders and a medical problems list a mile long, her nurse, my mother, and me to the event but I was going to try!
On Saturday, March 30, I walked into the main event room at the Liberty Science Center where lunch was being served and I immediately saw the CHI table right next to the NORD table. Standing behind the tables were familiar faces and I immediately knew the stars were meant to align that day. I had a great conversation with Julie Raskin, catching up since the last time I saw her. I’ve known all along that I wanted to be more involved in the Rare Disease community but up until this point, Emmeline had been medical unstable and often too sick for me to make commitments. I asked Julie what events were coming up that I could participate in and she immediately told me about the Million Dollar Bike Ride in Philadelphia in June. It almost felt too good to be true.
In my life before Emmeline, I was a cyclist. My journey started on road bikes in the mid 90s riding all Spring, Summer, and Fall with my mother. We would ride anywhere from 10 to 30 miles multiple times a week. By 1996, my cycling career took a different path and I started racing BMX bikes. Around 1998, I started traveling all over the East Coast and racing in Nationals all over the country. I had won state championships and earned top 10 spots in my age group over the years. My BMX career last through high school, college, grad school, and move across the county. In October 2014, I had to hang up my bike as I found out I was pregnant. I figured I would take a “maternity leave” from racing and start back up once Emmeline was a few months old. That plan never came to be as Emmeline’s medical needs took up all my time and moved me back to the East Coast.
So, when I heard of a bike ride to help raise funds for research, I could feel my life before Emmeline connecting with my life with Emmeline. I am not going to lie, I was nervous! I was committing to riding 13 miles on a road bike. It had easily been 15 years since the last time I took my road bike for a ride. I knew I had been spinning twice a week for almost 2 years, so how bad could this be? I took the leap, committed to raising funds, and used this as motivation to stay healthy and at least get back on my bike for a day.
The morning of Saturday June 8th started with alarm going off hours before it normally does. My husband, mother, and I got up and got ourselves ready. I had packed my trusty riding capris with the extra padding to make me a little more comfortable on the ride. I put on my team CHI jersey and decided I at least looked the part of a cyclist. We then woke up Emmeline and took care of most of her morning care. We got into the car and headed to Philly. I knew I would be riding with the 16 year old son of close BMX friends. I felt those nerves start to surface again as we pulled into the parking lot and I could see the starting/finish line … this was really happening. I put my bike together, put on my clip shoes, got Emmeline in her stroller and checked in for the big day!
The ride consisted of 784 riders representing 34 different rare disorders. Everyone was riding either 13 miles, 34 miles, or 72 miles. My ride group was the last to take off and I was ok with that! I clipped in to my pedals and started moving. In no time at all, I felt comfortable on the bike that sat in the garage all these years. I took the ride slow and enjoy the scenery of the Schuylkill River. The weather was perfect for a bike ride, not too hot, not too sunny, and just enough of a breeze to stay comfortable. I chatted away with my riding companions and before I knew it, we were at the rest stop. I couldn’t believe it! I had successfully navigated 5.5 miles and in no time at all.
Of course I checked my phone which included updates from my husband about Emmeline. Her sugar was 77 and he was feeding her breakfast and would bolus her fluids thru the g-tube once she was done with her oral feed. I had a snack, took some pictures, and jumped back on the bike to complete the rest of the ride. During the next 2 or 3 miles, I remembered just how much I loved riding. It occurred to me that after all these years off my road bike, I still had it. I started thinking of all the rides that I could do once I got home. My passion for cycling was reignited. I finished the ride strong and quickly realized I probably could have handled the 34 mile ride. My new goal is to do the 34 mile ride next year and the 72 the year after!
We do not plan as Emmeline, from go, is not a “planner.” She does things her own way and on her own time. That being said, my hopes for this summer include many bike rides. I can’t wait to re-explore all the old rides and bike paths that got me started in my cycling career back in the mid-90s. Emmeline’s birth lead me away from cycling, into a medical world of rare disorders that most medical professionals have never heard of. Yet, those same rare disorders have led me back to cycling.
