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How One Woman’s Medical Battle Inspired Her to Help Kids with Special Needs

After a life-changing volunteer mission, Simone Cavanaugh created Pivot International to provide much needed medical care to kids with special needs living in Nicaragua.

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Simone Cavanaugh works with special needs kids in NicaraguaPhoto: Roger Aziz

Great Canadians: Simone Cavanaugh

The aching started when Simone Cavanaugh was six years old, acute enough that she’d wake in the night crying, clutching her knees and ankles. Doctors dismissed her concerns as growing pains, but within two years, Cavanaugh—eventually diagnosed with juvenile idiopathic arthritis—needed a wheelchair to get around. The condition affected her hips, as well, and would later attack her back and sternum.

“It took almost seven years for doctors to find the right treatment,” says Cavanaugh, now 24. “We tried gluten-free diets, naturopathy, and many medications with many side effects. Nothing ever got me out of the wheelchair.”

The right treatment—injections of biologics, which are proteins derived from human genes—wasn’t available when Cavanaugh was young. Today, this regime allows her to walk on her own and provides effective enough pain management that she can study law at McGill University, as well as help children with physical challenges in Central America through her Montreal-based organization, Pivot International.

Founded three years ago, Pivot was born out of a college trip Cavanaugh took to Nicaragua in December 2011. Originally intending to pick coffee for a women’s cooperative with the rest of her classmates, Cavanaugh spent the bulk of her time with Milton, the four-year-old grandson of the woman who was housing her.

Milton was largely non-verbal and couldn’t walk or sit up on his own. Having been the coordinator of a summer camp funded by the Arthritis Society, a staffer at a program for kids with special needs, and a volunteer with Handicap International, Cavan­augh knew the boy had cerebral palsy. But, living in a rural area without access to services, he hadn’t been diagnosed. As Cavanaugh played with Milton, she showed his family how to communicate with a child with limited verbal and motor skills.

“Rather than push a crayon into his hand and guide it, I would hold up each colour and ask if it was the one he wanted,” says Cavanaugh. “He was able to say ‘yes’ and ‘no.’ He ended up saying ‘no’ to everything because he was so excited to express himself.”

When Cavanaugh arrived back in Montreal, she made a plan to raise enough money to buy Milton a wheelchair, a walker and other aids. In December 2012, she returned to Nicaragua with occupational ther­apist Marie-Kim McFetridge, currently the paramedical director at Pivot. They worked with Milton for two weeks, focusing on his motor skills. Four years later, his verbal capabilities have greatly improved, and he eagerly engages with others.

“We have fewer resources in Nicaragua than in Quebec, but we have more freedom to build personalized services,” says McFetridge. On each annual trip, the group—which now includes two more occupational therapists and two project man­agers—assesses an average of five children and brings equipment for kids evaluated the previous year. Families receive an update on their child’s condition and, when appropriate, a set of therapeutic activities.

Having people on the ground in Nicaragua is essential to Pivot’s success. Since 2012, Madeline Mendoza, whose background is in community development in Managua, has been in charge of local logistics. “Pivot has had such a positive impact,” she says. “This last trip, the team brought a Braille machine for a 15-year-old blind girl who just finished elementary school and is eager to continue her education. It’s rewarding to witness how motivated she is.”

In time, Cavanaugh would like Pivot to be Nicaraguan-run and have other bases in Latin America. For now, she’ll keep getting Canadians involved. She regularly visits Montreal’s Mackay Centre, an elementary school for kids with disabilities. She shares stories about Pivot, and the students throw bake sales and host toy drives. “They’re so passionate,” says Cavanaugh. “It’s really cool, having kids here working for kids there.”

Simone has been granted Montreal’s Laurie Normand Starr Award. At 25 years old, she is the youngest recipient to date.

To read more stories about inspiring individuals from across the country, check out Great Canadians: Ordinary People Making a Difference!

Originally Published in Reader's Digest Canada