by Mary Dufton
Sylvia and Bob Langlois’ son Andrew was born with hydrocephalus in 1966. At the time, periodic home visits from public health nurses to monitor their child’s condition were the primary support for families like theirs.
Sylvia recalls, “One day, when Andrew was around two years old, the nurse mentioned that she knew of another family, who lived nearby that had a son Andrew’s age with hydrocephalus. Sylvia and Shirley kept in touch, even when the family moved to the Toronto area. When Andrew was four years old, Shirley told Sylvia about a new spina bifida and hydrocephalus group, which Sylvia then joined. Sylvia had an interview with the local Oakville newspaper about this new group and as a result, three other mothers, one of whom was Bonnie Charbonneau, joined. Eventually, Shirley became the President of the group that became the Spina bifida and Hydrocephalus Association (SBHAO). Later Bonnie Charbonneau became the President and Executive Director of SBHA0.
“At first, I felt like the odd person out. Andrew had hydrocephalus and the Arnold Chiari malformation, but he did not have spina bifida like most of the other children. Our concerns were very different. However, I remained with the group and soon felt welcome.”
Andrew faced many challenges in his lifetime. He entered the public school system in 1971, years before Bill 81 guaranteed children with disabilities’ rights to public education. His family received a lot of support from SBHAO. Later, in her efforts to support other children like Andrew in the school system, Sylvia served on the Special Education Advisory Committee (SEAC) in the Halton region.
Despite severe learning disabilities, Andrew graduated from Grade 12. He then studied at Sheridan College and graduated four years later with a diploma in Human Resources Administration. However, his learning and physical disabilities made it difficult for him to find employment, so he became a dedicated volunteer at a local secondary school for individuals with intellectual disabilities, which he enjoyed. He also participated in track meets and races through Erinoak, a treatment centre for children, which organized trips to Variety Village.
Until his death last summer at age 56 from unrelated health conditions, Andrew lived independently in assistive living through the March of Dimes for about nine years. Although he had many falls from his poor balance and walking, Andrew was determined to keep mobile as long as possible. Eventually, after a couple of bad falls he transitioned to a wheelchair.
Regardless of his limitations, Andrew loved being included in family events and was close to his parents, sister Marian, brother John, four nephews and two nieces. He enjoyed talking to anyone who reached out to him.
Over the years, Sylvia has witnessed the Spina Bifida and Hydrocephalus Association of Ontario grow to become the national organization it is today. Although folic acid supplements and amniocentesis have reduced the incidence of babies born with spina bifida, hydrocephalus has not declined.
Sylvia believes that one of SBHAO’s most meaningful early achievements for families is the establishment of the combined spina bifida and hydrocephalus clinic for children at the Bloorview MacMillan Centre, now known as Holland Bloorview Kids Rehabilitation Hospital. This meant that individuals and families living in the Greater Toronto area could have appointments with all their specialists in one day. “Andrew would see the urologist, neurosurgeon, orthopedic surgeon, physio and occupational therapist all in one day. And he would get to have lunch in the cafeteria, which he enjoyed.”
Sylvia encourages people impacted by spina bifida and or hydrocephalus to reach out to other families through Hydrocephalus Canada. “You are not alone. Support is there, both in the form of information and educational opportunities and the emotional support from interacting from with others facing similar problems.’
Throughout Hydrocephalus Canada’s history the Langlois family has supported the organization on an ongoing basis. Since 1978, Sylvia Langlois has volunteered her time and expertise in various capacities. Sylvia has contributed as the organization’s librarian, Education Committee Chair, Board of Directors Secretary, SEAC representative, member of the Dr. E. Bruce Hendrick Scholarship Selection Committee, content writer for Current magazine and donor.