By Lorri Benedik
Jennifer and Stéphane
“I am not comfortable with the label “awesome” as I am no different from any other parent of a special needs child. I don’t have all the answers. What I have are strengths, which I have used to parent and advocate for my son.” ~ Jennifer Damiani
When he was a month old, Jennifer Damiani and Stéphane Boivin learned that their son Gabriel had a serious health issue. His heartbeat was weak so their doctor sent them to Sainte-Justine Hospital for an ultrasound. The test revealed the presence of markers in his heart called tubers. Later, Gabriel was diagnosed with TSC (tuberous sclerosis complex), a genetic disorder that causes benign tumors to form in the heart, brain, and other organs.
“I began reading about TSC and observed my son closely,” said Damiani. ”Gabriel’s development progressed normally; he walked at 10 months but we noticed that he would often stare down at his hands and feet.” Around this time, there was a cover story about autism in Time magazine. Damiani read it and recognized traits in Gabriel. At age three, they received an official diagnosis of autism spectrum disorder (ASD). He developed epilepsy and requires medication to prevent seizures.
For the past 20 years, Damiani has been Communications Manager, Corporate Affairs, for Brasserie Labatt. “In my work life I resolve problems by breaking them down into components,” she said. “I approached Gabriel’s challenges in the same way – as soon as I suspected he had ASD, we hired therapists to work with him.” This helped him evolve and helped her feel less helpless. Labatt was very supportive, offering her time off for Gabriel’s many medical appointments.
When he was 11, Gabriel started attending Summit School, which Damiani describes as “the most beautiful and loving environment.” She joined the governing board. She has also been on the board of West Montreal Readaptation Centre (WMRC or CROM) and maintains connections with a network of doctors, social workers, and educators.
Gabriel is now 21 and recently graduated from Summit. “He is a wonderful young man; funny, sweet and shares his dad’s passion for music,” she said. Damiani explained that she and Boivin are very different but complement each other perfectly. “Stéphane is a creative type, and I am an organizer,” she said. “What we have in common is a deep love for our son and dedication to his well-being.”
Ann and Brian
Back row: Brian Wraight and Ann Gagnon with their sons Bradley and Kieran in Parc Harpell in Ste-Anne-de-Bellevue
at a fundraiser for Centre Philou on October 23. Photo: Allison Randolph
Ann Gagnon has evolved tremendously since meeting her husband, Brian Wraight, when they were teenagers working at Burger King. Today they are mom and dad to Bradley, 23, and Kieran, 18, who both have special needs. “Anyone who knew me growing up would say that I was quiet and unassertive,” said Gagnon. “Because of my sons I have become fearless and a fierce, outspoken advocate.”
When they married, Gagnon and Wraight wanted kids badly. She suffered two miscarriages before becoming pregnant with Bradley. “When he was born, in 1998, we knew immediately there were serious health issues,” she said. “He had microcephaly, clubfoot, and a hole in his heart (atrial septal defect). As a newborn, he spent a month at the Montreal Children’s Hospital and, at six months, had surgery on both feet.”
After her maternity leave, Gagnon returned to her job at Bombardier and enrolled Bradley at the company daycare. Bombardier invested large sums each year to upgrade their daycare facility and equipment to accommodate his needs. In 2002, Kieran was born. “He seemed fine at birth,” Gagnon said. “But, as time passed, he was not meeting developmental expectations, and our social worker urged us to have him tested.” It was determined that Kieran had Alpha-thalassemia X-linked intellectual disability (ATR-X), a rare genetic disorder affecting multiple organ systems, a syndrome that Bradley also was diagnosed with.
Bradley and Kieran are both non-verbal, visually impaired, require wheelchairs for mobility and help with personal hygiene. “Bradley can crawl, climb into his chair and feed himself,” said Gagnon. “Kieran can’t do any of these things and is less aware of his environment.”
Until last year, both brothers attended Philip E. Layton School of the English Montreal School Board. Bradley graduated and now goes to Centre Philou.
“Our family circumstances are challenging but we have learned that life is never perfect; if you are willing to listen, everyone has a story,” said Gagnon. Wraight has worked for GSK pharmaceuticals for 31 years and has been their sole provider since Gagnon was laid off from Bombardier seven years ago. When she is not caring for Bradley and Kieran, Gagnon volunteers with organizations that lobby for services and rights for the disabled.
“Although my sons cannot express how they feel in words, we have learned that so much of human communication is nonverbal,” she said. “A look or gesture from Bradley or Kieran tells us everything we need to know.”
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