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Client Stories

Marwa's story

May 2016

The movement of brightly coloured jelly beans popping across the floor was the catalyst for OCTC client Marwa, then 2 years old, to reach a significant milestone.

At that moment, at an age when most youngsters can run and climb, visually impaired Marwa was still learning to crawl, supported in achieving this ability and expanding her world.

This inspiring scene unfolded a few weeks after the unveiling of the Smilezone-sponsored renovations at the OCTC Smyth Road site in March 2015. As a result of the Smilezone Foundation efforts and investment, the Centre’s core site waiting area and specific treatment areas were strikingly transformed. In particular, the waiting area was made more entertaining, comfortable, and accessible, harnessing up to date technology and child-focused whimsical touches to do so. Indeed, the trigger for Marwa’s intrigue, discovery and movement was tied to the new totally interactive projection floor, on which brightly lit 3D images respond to touch, creating a digital playground of changing images, including sports, water scenes, balloons and jelly beans.

Marwa’s reaction to the floor’s popping red jelly beans was an unforgettable moment for her mother Sonia Zouari.

“It was the stimulation she needed, close enough to her face, and at the right moment, at the right speed to stimulate her interest and her ability to crawl,” recalls Sonia. She also saw the joy of another child using a walker, who played with the soccer images and “felt like he had actually scored a goal.”

Sonia was so inspired by the impact of the 3D projection equipped floor, she subsequently secured a grant from the Military Police Fund for Blind Children to install a similar one at OCTC’s Kanata site last February.

The miracle of Marwa

The journey from birth to crawling had been long and challenging for Marwa and her family.

Despite concerns about the baby’s development as early as 17 weeks into the pregnancy, Sonia refused to believe she would have anything other than a perfect child, like her other daughters, Noor and Jasmine, now 10 and 8.

But, the concern was warranted and Marwa was born with a rare genetic condition, as well as problems caused by a reduced blood supply to her heart and brain during the pregnancy. Her genetic malfunction is so rare; only nine cases have been identified world-wide, none of whom have survived past three, Sonia explains.

Marwa turned three on January 22, and while only the size of a 15-month-old, she is her family’s miracle.

Marwa spent her first five months at CHEO and was at risk of aspiration and other complications. While developing beyond expectations, Marwa is still vulnerable and last had to be resuscitated weeks after her second birthday.

She has serious cognitive development delays, a velo-pharyngeal insufficiency, cerebral blindness and impaired hearing. She is fed through a gastric feeding tube. While she remains non-verbal, she has started to walk, building her own confidence, and further kindling the hope and appreciation of Marwa’s family.

Sonia’s guiding principle

Sonia was raised by her mother to believe in the wisdom of Confucius: “Wherever you go, go with all your heart.” This principle continues to guide Sonia in her roles as wife, mother and award-winning architect. While Marwa’s challenges have changed the texture of the family’s life, Sonia recognizes it has also been a blessing.

“Marwa is a miracle, who has taught us patience, resilience, perseverance and strengthened us as a family,” she says.

Sonia credits Marwa’s progress to the outstanding care she received during her five months at CHEO and the early intervention from OCTC that began at CHEO when she was three months old.

At first, accepting Marwa’s reality “was extremely, extremely difficult,” Sonia admits, especially without the support of extended family. Sonia and her husband emigrated from Tunisia in 2001.

The family struggled to find a balance between the needs of the older children and the care of Marwa. Sonia spent most nights at the hospital, returning home in the early morning long enough to organize the older girls for school, and pumped breast milk constantly to give Marwa the best possible start. A happy consequence of the disrupted family routine is the deep bond the older girls have developed with their father, Sonia says.

At 18 months, Marwa began to attend the Centre de l’Enfant Aux 4 Vents daycare in Nepean, where an additional staff member to support Marwa’s needs is supplied through Ottawa’s Children’s Integration Support Services.

OCTC continues to provide Marwa with blind/low vision support, occupational therapy, physiotherapy and language therapy. Each week, a therapist from the Kanata site goes to the daycare to work with Marwa and train the daycare caregivers.

A positive contribution

Sonia recognizes the support she and other parents receive from OCTC allows them to not only continue in their careers, but to bring the knowledge gained as parents of special needs children to their professional lives.

Inspired by Marwa, Sonia led a design team that, last August, won an international competition to design a bump-proof, multi-sensory “Sponge House” as an ideal living space for individuals with cerebral palsy.

The team donated the prize money of close to $7,000 towards the purchase of a specialized pressure mapping system to give OCTC therapists a simplified and more accurate tool to asses seating surface pressures and reduce the risk of pressure ulcers in wheelchair users.

Sonia will continue to look for opportunities to support OCTC, as well as advocate for improvements to the built environment for those with special needs. As Chairperson of the Ottawa chapter of Construction Specifications Canada, last March she organized a conference which brought together a panel of experts from construction, engineering, architecture and design fields to explore ways to ensure accessibility for all public and private spaces.

“Accessibility to all types of environments shouldn’t be a privilege, but rather a right for everyone,” she says.

Many challenges remain ahead for Marwa and her family, for they realize that every step forward creates new challenges. But for a child who didn’t respond to stimulus until she was nine months old, the dark-eyed cherub has defied the odds and now snuggles into her Mother’s shoulder with unmistakeable love and trust.

 

 

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