Sun | May 19, 2019

‘I learned to walk at age 11’

Published:Sunday | February 17, 2019 | 1:34 AM

“My mother knew something was wrong when I was born with a slight deformity in one of my legs,” said Peart, as she recounted the series of events which led to her diagnosis.

“She never thought it was that serious until I started breaking,”she continued. After being rushed from St Elizabeth to the closest hospital in Mandeville, her mother was adamant about finding out what was wrong with her only child.

“The doctors at the time had no idea what was wrong with me. My mother discharged me herself and took me to the Bustamante Hospital where she met Professor Golding, who was able to diagnose me with Osteogenesis imperfecta.”

Cultivating a life around it

With her fate now predetermined by this rare genetic disease, Peart had to learn how to cultivate a life around it. She said “growing up was a challenge”, as she explained how the disease affected her performance at school and socialising with her peers.

“I barely attended basic or primary school, because I was always breaking,” she said. In her first year of basic school, Peart was fixated on playing with her classmates like a normal child. During the encounter, she broke a leg, which made her unable to attend school until her final year.

“School, for me, never kicked in until I started to attend Maggotty High. I had the best time ever and I have to give a lot of credit to my past principal who enabled me to become more outspoken,” beamed Peart.

At Maggotty High, she was able to join the debating and drama clubs and was even part of the teams that entered JCDC. Though high school was significantly easier, Peart was still undergoing surgeries to correct her scoliosis and straighten deformed bones with the help of Professor John Golding and Dr Dayanand Sawh, who is her current doctor.

“I did not learn to walk until I was 11,” said Peart. The process of walking was a daunting experience, which was not only scary, but painful. With bright enthusiastic eyes and a mischievously shy smile, Peart told Outlook Magazine about the day she surprised everyone by walking into her graduation ceremony from primary school without crutches. “That was the last time I walked with them, and I do not plan on taking them up any time soon,” laughed a vibrant Peart.

“Most persons would think I am extremely bubbly, excited, and outgoing. But then, when I am by myself, I lament over the situation,” said Peart. There is no cure for Osteogenesis imperfecta, and it is a life filled with trauma.

“With no cure, you just have to adjust to the situation as it comes,” she explained. “I was changing in ways I did not understand. I went from being very slim to becoming voluptuous. After the scoliosis surgery, I even developed a little hump,” said Peart, who admitted that she battled with body-image issues for her entire life.

“I always thought I did not match up to the standards society dictated to us. It took a period of adjustment to accept that this is the way I am and it is never going to change,” said Peart.

The day she decided that she had had enough and was done being hard on herself, came when her aunt had a baby who became the centre of her world.

“I became a role model to someone. That person was looking up to me, so I had to adjust my perspective on life and become a positive influence for her,” she said.

“What motivates me are my goals. Those keep me on track,” said Peart, who is set to graduate from the University of Technology in November with a degree in Human Resource and Marketing.

“Osteogenesis is rough. It is draining, toxic, and stressful on the person going through it and those around them. You have to find something that you like and set goals. As Nicole McLaren Campbell said, build a vision board and create a path that you would like to travel, which will help you get to your goals,” she said.

Releasing her documentary is also another important goal for Peart.

“I want to bring awareness to Osteogenesis imperfecta and create a foundation to help those living with the disease,” explained Peart. With the help of creative director Jik Reuben and several generous sponsors, Peart will be screening her documentary, The Sanshegay Project, on Saturday, March 2, at Chillitos on Hope Road.

latara.boodie@gleanerjm.com