Tiffany Cook - "This Moment Is All There Is"
My journey with Duchenne muscular dystrophy advocacy began on September 11, 2007, when my 7-year-old son, Wil, was diagnosed with Duchenne. When a family is handed a “death sentence” for their child, a definitive line is drawn in what life was and meant before diagnosis and what life is and means after diagnosis.
The years leading up to the birth of my children were spent servicing other children with varying disabilities as a Speech-Language Pathologist. I can clearly remember the shift in my career performance once I had children of my own. There was a marked increase of understanding another’s perspective. I could better understand parents’ worries, frustrations, heartaches, and triumphs. It wasn’t until my son was identified as a child with special needs that I completely understood. The difference was, however, my son was diagnosed with a disease that is 100% fatal with no cure in sight. This was unfamiliar territory for me from any perspective.
In a sense, my professional career prepared me for the journey with Duchenne muscular dystrophy. For my son, the diagnosis provided a sense of relief. In the months leading up to his diagnosis, he often questioned: “Why am I slower than my friends? Why do I get so tired? Why can my little sister run faster than me?” The diagnosis of Duchenne lifted the burden he carried all those years before and gave him answers to his questions.
As for me and our family, the diagnosis came with fear, grief, frustration, and bewilderment. Following the initial diagnosis, emotions were fragile, and everyone was in a different mental place, never the same place at one time. We began our journey searching for information, seeking other families battling this disease, and traveling anywhere to receive the best care. As we learned more about Duchenne and as Duchenne began to take apparent effect on Wil’s abilities, we began to focus on learning how to “live” with Duchenne and how to not let Duchenne define us.
Wil, despite all his physical decline, has taught me how to cherish each moment as if it were my last. The old saying by Einstein, “Learn from yesterday, live for today, hope for tomorrow,” has become my mantra. Wil’s acceptance of this disease, which is apparent in his infectious smile, has taught me to truly embrace every moment and simply be happy.
Through this journey, my family has grown to include my “Duchenne family.” It is with and for my extended family that I joined the non-profit organization, CureDuchenne, as the Family Resource Manager. Nearly 11 years ago, I was in a cold, dark place, feeling sorry for myself and my family. Through learning how to cope and live with a terminal illness, I am now able to focus on what matters and live in the moment. The years spent working with children diagnosed with varying disabilities, in addition to my son’s diagnosis of Duchenne, set me on a path to continue my childhood passion of helping others.
I am grateful for the nomination by members of my extended family, Debra Miller and Tim Revell, as a Consumer Reviewer for the CDMRP. This role allowed me to represent the Duchenne community and truly advocate for all individuals living with Duchenne. My participation with the CDMRP strengthened my sense of hope. I truly believe that together, we will CureDuchenne!
and Wil - currently age 18
Last updated Monday, January 3, 2022