On Monday, April 8th, 2013, our son Leo was diagnosed with muscular dystrophy. Six weeks later a genetic test confirmed his diagnosis – Duchenne Muscular Dystrophy.
Leo was sitting on Katie’s lap when our pediatrician told us the results of a battery of tests she had performed over the weekend. We knew very little about muscular dystrophy at the time, and the first two questions we asked were, “Is he going to die?” and “Will he always be Leo?”. The answer to both questions is yes.
Almost five years and a world of knowledge later, those are probably still the two most important questions.
We came home from the pediatrician’s office that day, surrounded by family, and began to grieve a future loss. Those first days the pain was paralyzing. The mornings were hardest. We were angry with God. We said over and over again “We can’t do this.”
If you know Leo, you know there is something particularly special about him. He is curious, funny, and determined. He loves to give and receive affection. He dances to Fleetwood Mac. His smile is infectious. This is what we mean, when we ask, “Will he always be Leo?” The answer is solace in our darkest hours.
We will, in all likelihood, outlive our son. The gravity of that weighs heavily on us. Someday we will have to explain to him why his body is failing him. But we have made a decision to give him the richest life we can, for as long as we can. A life full of camping trips, and music, and good conversation. Not the life we imagined for him, but a rich life nonetheless.
What happened in the weeks and months and almost a year following Leo’s diagnosis was the birth of Team Leo. You stopped by with homemade dinners and plenty of wine. You ate and drank with us and let us tell our story. You did our laundry. You answered the phone in the middle of the night. You sat in the hospital with us. You surrounded us with your love, grief, and constant prayers.
For the last four years a group of friends, family members, neighbors and strangers have gathered to celebrate Leo. In 2014, over 200 walked. In 2015, we came together for a community meal. In 2016, Team Leo packed out one of our favorite neighborhood restaurants. Last year we took a hiatus after the birth of our daughter.
This year marks the five year anniversary of Leo’s diagnosis. We’ll meet at Liberty Station, take a beautiful one mile walk (kids are welcome to bring bikes and scooters!), and then meet for lunch, a raffle, and a time for us to share a bit of our story on the patio at Moniker General.
We started Team Leo with three simple goals in mind: to establish a fund for Leo’s future medical costs, to promote Duchenne awareness in our community, and to build a “team” around Leo and our family. Those goals have been met in ways we couldn’t have dreamed of, but we still need your help.
We hope you’ll join us.
Ed and Katie