My Voice: Francis Desmond, 13 years old

Sometimes the best way to tell your story is through pictures. We can feel what another feels by seeing things the way they see them. Francis Desmond is an 8th grader who likes to draw. He also has Duchenne muscular dystrophy. Francis and his dad, Steven Desmond, decided to turn their journey into art and have just their father/son illustrated project, A Life With a Purpose. This powerful and heartwarming book uses illustrations by Francis, accented by 50 professional photojournalism style photographs by multi-award winning photographer Steven. The book leads in with an eleven page introduction of "three days which will never be forgotten." All profits through the sale of this book will go to Duchenne research. Francis isn’t just touting a life with a purpose, he is living it. And that’s why he is our featured voice for April.

 

PPMD reached out to Francis and Steven to learn more about this incredible project, including how they came up with the idea and how we can get our copy!


Meet Francis Desmond

Congratulations on the book Francis and Steven! Francis, tell us a little bit about yourself. How old are you and what grade are you in?

FRANCIS: I am 13, and in the 8th grade.

STEVEN: He is in a special school "Autistic Services of Western New York" located in Williamsville, NY.
 

When did you all learn that Francis had Duchenne?

STEVEN: We learned of Duchenne on February 19, 2003.  Francis was 4 ½  years old and a neurologist suggested we research Duchenne.  A muscle biopsy was done at Strong Memorial Hospital in Rochester, NY in late 2006 and we received the full results on January 3rd, 2007.
 

Francis, what would you like to be when you grow up?

FRANCIS: [I want to] work at Weber's Mustard.

STEVEN: Weber’s Mustard is the 90-year old company that my wife, Suzanne, and I own and operate. Weber's Mustard is the number one selling brand of mustard in the Upstate New York Region.


Wow, what a cool family business!  So, tell us about the book you did with your dad. How did you guys come up with the idea? What do you hope the book will do? How was the release party?

FRANCIS:  [I] made drawings in the book and [we put them with] pictures my Dad took.  My Dad made the book.  I want people to like it and want to give the money made to children with DMD and research of DMD.  Book Release was good, about 200 people were there and my favorite part was signing all my books for people.
 



You’re famous!  When someone asks you about Duchenne, what do you tell them?

FRANCIS:  I also have autism but with DMD, I can't walk that well anymore.  It's ok because I have muscular dystrophy and I'm OK with my wheelchair.

That’s a great outlook. Finally, Francis, if you could have dinner with three people, real or fictitious, living or deceased, who would you choose and why?

FRANCIS:  I really enjoy having dinner with Luke and my Dad and being with my family.  There is really nobody else I'd like to have dinner with.

That’s perfect Francis, thank you! And thanks Steven!

Learn more 

You can order your copy of A Life With a Purpose by contacting Steven on Facebook or through email.



 

 



Will Nolan, Communications Director
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