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Painting a Life
With a Purpose
Buffalo News (NY) - 7/2/2012
Francis Desmond was given a piece of paper and told to sketch a drawing that would decorate one of the basement walls in his home.
The 9-year-old drew a landscape, including a road with cars, people and a school. When he finished the drawing, Francis took his pencil to the wall and began recreating the drawing in life-size.
Surprised by Francis’ dedication, his father, Steven, didn’t want to miss a single detail. For the next seven months, he spent Saturdays and Sundays discussing colors with his son and painting over the drawing, brush stroke by brush stroke.
"With his illness, he doesn’t speak a lot," said Steven Desmond. "All his talent flows from his mind."
Francis has autism and Duchenne Muscular Dystrophy, a degenerative disease that affects voluntary muscles.
The painting on the wall in their Orchard Park home is now featured on the cover of "A Life with a Purpose," a picture book that Francis, now 13, and his father created to raise money for Duchenne Muscular Dystrophy. The two released the book in March, and Steven wrote a $5,000 check in early June to Parent Project Muscular Dystrophy.
The book features 50 photos of Francis’ artwork, accompanied by 50 photos of family moments taken by Desmond.
Francis works with pencils, paints, crayons and mixed media to construct his creations. His artwork hangs around the house, and he has an office connected to his bedroom where he can work.
The teen has found a voice through his artwork, and the publicity the book has brought has opened him up and made him more outgoing.
Francis’ favorite drawing is the first one featured in the book: an orange robotlike figure with a colorful sky in the background. He traced magnets to draw the shape of the robot. It now hangs in his bedroom with a number of his other pieces.
The release of the book was the first time Desmond spoke publicly about his son’s illness. The first 11 pages contain journal entries from the day Francis was born, the day the doctors first suggested his son had Duchenne Muscular Dystrophy and the day Francis was officially diagnosed.
As early as age 2, Francis began drawing. Amazed by his son’s creations, Desmond kept each piece of artwork.
"I saw that from a very early age, Francis had a unique way he did his artwork, the way he combined colors and he took what was in his mind and put it on paper," Desmond said.
Desmond remembers receiving a call from his wife, Suzanne, in February 2003, during which she told him the doctors suggested they begin researching Duchenne Muscular Dystrophy. In that moment, Desmond’s life changed.
"I turned on the computer at work, and the tears flowed when I read about the disease. For the next five days, that was all I could do," said Desmond, who with his wife owns the mustard company Heintz & Weber Co. "I basically sealed myself off from the world, and I didn’t talk about it."
The book’s release in March prompted Desmond to open up about his son’s disease, which has been painful. But raising money for research and watching Francis open up has been rewarding.
The point of the book is "to get people cured," Francis said.
Duchenne Muscular Dystrophy is the second most severe strain of MD, and it is not curable, at least not now. Most children begin showing signs around age 3 and are in a wheelchair between the ages of 8 and 12.
The Desmonds have sold about 250 copies of the book so far. Local support for the book has been strong, but Desmond hopes to put the book on a national stage. If he can make it to the Ellen DeGeneres Show or the Today Show, he can bring national attention to the issue and raise even more money for research, he said.
Francis was originally wary of the book’s release, telling his father he wasn’t keen on signing autographs. Steven had him sign about 10 to 20 copies a day prior to the release. But on the night of the release in March, Francis took the microphone at the Orchard Park Fire Company and said he wanted to sign every single book. He and his brother and sister, Luke and Zoe, sat signing books for 90 minutes.
The book has generated attention for the cause, and the money raised has given both Francis and his father "a life of purpose."
Earlier this year, before the book’s release, Desmond walked into his son’s office one day and found him drawing.
Francis looked up at his father and said: "Can this be in my second book?"
Information on purchasing "A Life with a Purpose" can be found at http://www.facebook.com/dprimefocus or by contacting firstname.lastname@example.org. The book is available by mail order nationally and internationally. The Desmonds can be reached at 852-7171.