A Wish Comes True

For most children, visiting the park with fellow youngsters is part of a typical day. The sounds of happy children running and giggling fill the air as they play on swing sets on a weekend or after school. This unfortunately was not a reality for five-year-old Ahmed Hussaini Syed, as going to public playground was considered too risky for his delicate skin which blisters and shears off at the slightest touch.
PCL Toronto employees Gail Lopez, Rob Oliphant,
and Clare Francis with the playset they constructed
for Ahmed and his family over two days.

Ahmed and his brother enjoy the backyard play set
constructed by three PCL Toronto volunteers.

To make life easier, Ahmed’s wish for a playground in his own backyard became a reality thanks to DEBRA Canada’s EB Ambassador Wish Program and three kind volunteers from PCL Construction who volunteered two days of their time to make Ahmed’s wish become a reality.

Epidermolysis Bullosa (EB for short), has been described by those in the medical community as “the most painful disease you’ve never heard of.” Globally, EB affects 1 in 17–20,000 live births. There are approximately 2,500 cases of EB in Canada. This rare genetic condition in its worst forms causes the skin to shear extremely easily, causing painful, open blisters and wounds. EB can mean a life of extreme pain and disability, and it is often fatal in infancy in the Junctional Herlitz type. The youngest with EB are often referred to as "butterfly children" because their skin is said to be as fragile as a butterfly's wing. Currently, there is no cure for EB.

“We were always afraid to bringing Ahmed to a public park”, explains his mother Ghaziya. “EB is so rare and it was unrealistic for us to assume that other children would understand his special needs. He had pleaded for years and has spent many hours enjoying the plastic playhouse at SickKids. I always thought it to be a distant dream, but thanks to DEBRA Canada’s Butterfly Wish Program, his dream has come true.”

The beginning of December is not a common time of year for children to enjoy an outdoor play structure. But it is ideal for EB skin, as hot summer days are avoided because heat tends to aggravate blistering.

PCL Volunteers Its Support

“We were a little worried about getting the job completed before the first big snow fall. In fact, we struggled with finding a reliable contractor to assemble the play structure,” explains Erin Hoyos, project coordinator for DEBRA Canada. “As PCL employees have supported DEBRA’s volunteer efforts in the past, they heard we were in need and generously provided three volunteers to build the play structure free of cost, leaving more funds available to fulfill future wishes.”

“It’s amazing how volunteering just a few hours of time can grant such a priceless reward,” says Clare Francis, workforce manager of Agile, PCL Constructors Canada Inc. Toronto’s off-site manufacturing facility. “Once we safely completed the structure, my colleagues Gail, Rob, and I were able to witness Ahmed and his brother try the play set for the first time. It was very rewarding to play a small role in bringing such happiness to their family, especially just before the holidays.”

Butterfly WISH Program

The Ambassador Fund a Butterfly Wish Program was launched in 2014, by patient ambassadors Jonathan Pitre from Russell, Ontario, and Deanna Molinaro from Stoney Creek, Ontario. Pitre’s wish to see the Northern lights went viral and sparked nationwide media attention. Dedicated supporters continue to follow Pitre’s progress as he undergoes a lengthy recovery from a clinical trial blood and bone marrow transplant in Minnesota.

Explains Pitre, “It’s so hard for most of us watching from the sidelines while other kids do the things we most want to do. Having been able to keep the EB Ambassador Wish Program and seeing more patients having their wishes come true really warms my heart. It brings me hope and I wish it brings others hope too, because sometimes hope is all we have to go on. I’m very happy and grateful by the generosity of our supporters/donors for giving us the opportunity to bring joy and happiness to our Canadian EB community.”

The Ambassador Wish program recently assisted with the purchase of a sit-ski for a seven-year-old EB patient in North Vancouver, BC, and helped an adult EB patient from Mississauga, Ontario complete a cycling awareness journey from Alberta to Ontario.

ABOUT EPIDERMOLYSIS BULLOSA

EB is an inherited, lifelong, recurring blistering disorder which affects the skin and internal organs. It causes agonizing pain and in severe forms, dysfunction of limbs and deformity of appendages. It affects both genders and people of every race and ethnicity. EB causes a person's skin to be so delicate that it's often associated with the fragility of a butterfly's wing., hence youngest affected are often referred to as “butterfly children”. EB ranges from mild (EB Simplex) to so severe (JEB Herlitz) that 87% of babies die before the age of one. People with EB are often swathed in gauze or specialized bandages. A rare disease affecting an estimated one in 17-20,000 globally, there are about 2,000 Canadians with Epidermolysis Bullosa. Approximately half-a-million people worldwide have EB. 

ABOUT DEBRA CANADA

DEBRA Canada is the only national non-profit charitable organization in Canada that is dedicated to assisting patients and their families who suffer from Epidermolysis Bullosa. The organization is a member of DEBRA International, which has chapters in approximately 40 countries around the world. To make an online donation or find out more about EB and how YOU can help, visit www.debracanada.org.

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