How a disability changed a family and brought hope to others

By Coral Hetherington

Susana Scott and her daughter, Victoria

At the beginning of 2002, Susana Scott was set in her career. As special assistant to the President of the federal Treasury Board she spent her time between Winnipeg and Ottawa gaining valuable expertise in navigating government bureaucracy and interpreting legislation. By the end of that year, life had changed dramatically. Diagnosed sixteen weeks into her pregnancy, Susana learned that her baby had spina bifida.

Spina bifida begins in the womb, when the tissues that fold to form the neural tube do not close or do not stay closed completely. This causes an opening in the vertebrae which surround and protect the spinal cord. Susana’s daughter, Victoria, was barely three hours old when she was whisked away to surgery to repair the cleft. At two weeks old she had to endure a second surgery to insert a shunt into her brain to drain spinal fluid because of hydrocephalus, a common condition of those born with spina bifida. Four more surgeries were required within the following 18 months.

Before antibiotics were available, most children born with spina bifida died soon after birth. Those who survived were severely disabled. With modern treatment, almost all children with the condition survive and most are able to live productive lives with some degree of independence.

Even with these treatments, however, most have some degree of permanent leg paralysis and often have difficulties with bowel and bladder function. The extent of paralysis depends on which part of the spinal cord is involved. The higher up the defect on the body, the more severe is the paralysis.

Intensive therapy was required to Victoria’s hips, legs and feet which had all been affected by the damage to her spinal column. With steadfast determination, she accomplished the milestones of rolling over, crawling, standing and eventually, with the help of braces, walking.

At age five Victoria entered kindergarten, the biggest problem being her parents reluctance to “let go” as she began her first real steps of independence. Now in grade four, her hobbies include swimming and playing music.  The SMD Foundation/ Easter Seals Manitoba named Victoria their 2011-12 youth ambassador.

Susana quit her job to stay home to tend to her daughter’s needs. Gone were the trips to Ottawa and rubbing shoulders with Canada’s political leaders. What remained were a mother’s passion to help and a promise to her own disabled child to do all that she could to make a difference for the vulnerable in our society. She created Brematson & Associates as a result of her personal experience with disability issues and the realization that families across Canada needed clarity surrounding federal government disability programs.

Susana maintains her vision, not only by acting as an advocate to assist families in disability tax credit and Canada pension disability claims, but also by liaising with the medical community and creating a network of dedicated specialists in disability issues.

Believing it important to give back to the community, Susana was the first to provide a donation to the City of Winnipeg’s Sponsorship program. Her five-year donation commitment is earmarked for the purchase of a special collection of books at the Millennium Library to assist children with disabilities to learn to read. The commitment also includes supporting the Sign-a-Story program, a shared reading program presented by a deaf storyteller. Brematson also financially supports the Society for Manitobans with Disabilities at its annual Dancing with the Celebrities gala fundraising event.

Anyone who comes in contact with the feisty little girl or her mother instinctively knows that they will somehow triumph over the hurdles strewn in their paths, each achievement a testimony to how a disability can change a family – in a good way.
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Coral Hetherington is accounts manager at Brematson & Associates.

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