We’ve been struggling a bit lately. Struck by the fact that time is passing so quickly and that the understood path that comes with Duchenne draws closer with each passing day. It seemed farther off when Connor was diagnosed at just 2 years old, but now that he is 7 and we have been living this reality for nearly five years, we know that next stage is closer.
As parents, we can’t help but hurt as we see the changes that these years have brought. Connor now asks to “ride” more often than before. As excited as he is to play with other kids, he’ll want to stop and take more frequent breaks, sometimes wanting to hide from them while he rests. He’s trailing more behind his classmates in line or at recess at school and making comments about how he just can’t keep up. His muscles are tightening up more and he’s asking for more leg rubs. We are lucky because Connor is still mobile and energetic, but when we know what the road ahead holds, even these changes catch our breath.
To be honest, we actually considered not taking part in the Muscle Walk this year because of the funk we’ve been in. Then it occurred to us…this is about more than how we are feeling. This is about Connor, the MD community and our Connor’s Crusaders family and how you remind us all year round that we are not alone and that we simply can’t give up hope.
It’s about the friend who sent us a picture of the Shamrocks on display at Lowes that her kids sponsored and excitedly put Connor’s name on.
It’s about my best friends using their own time to read research papers and review trial data so that they can talk us through it and then texting back and forth when it was just one of “those” nights.
It’s about my Dad’s bowling league rallying around Connor every year.
It’s about the tremendous effort from our friends at CrossFit U-Town every year to put on an amazing event in honor of Connor and our friend Lauren.
It’s about our friends at Peebles VFD checking in on Connor all the time.
It’s about my Mom volunteering at the MDA offices and she and my Dad helping out at MDA events.
It’s the countless people who tell us they pray for Connor and our family all the time.
It’s about so many of you knowing and asking about the Muscle Walk all throughout the year before we even say anything.
How could we not participate in the walk when it is a CELEBRATION of all the love and support you give us all year?
So with that, we are once again calling on our Connor’s Crusaders and asking that you please consider donating to the MDA in Connor’s honor as we collectively pursue their mission to help those living with the various forms of Muscular Dystrophy, including Duchenne. Funds will help fuel clinical trials, provide equipment and services to those that need it, and once again create a magical summer camp experience where these kids can live “live unlimited”.
The 2018 Muscle Walk, it is once again being held at the Pittsburgh Zoo & PPG Aquarium on Sunday, May 20th at 9am. If interested in joining us for the walk, we ask that you please sign up by Tuesday, May 8th so that we can be sure to secure enough wristbands for everyone. Please note that the MDA has changed things up a bit this year, and we will NOT receive t-shirts ahead of the event. Instead, anyone who donates or raises $100 will receive a shirt in the mail directly from the MDA after the event. No worries though, we will have another way of showing our Connor’s Crusaders spirit the day of the walk.
Thank you again for your love, support and generosity…and for being the reminder to keep our spirits high and hope alive.
Ben, Melanie and Connor Hennick