A Bradford teen with a rare illness is actively advocating for disability awareness and inclusion.
Niki Tokhi, a Grade 9 Bradford District High School student, is involved in both the local and wider communities despite facing challenges due to a rare condition called Musculocontractural Ehlers Danlos Syndrome — a condition so rare that she and her sister, Lexi, are two of 30 people with the diagnosis worldwide.
“It’s been a bit of a challenge for me,” says Niki, reflecting on the issue she faces with her disability, which causes fatigue and affects her ability to walk without assistance. “I can walk, but I can also fall easily, so my wheelchair helps.”
Living with a disability is a shared experience in her family.
Lexi, 25, faces the same condition and also began her advocacy work at a young age. While in Ottawa last year for the Canadian Organization for Rare Disorder’s Rare Disease Day Summit 2024, Lexi was invited to speak to Parliament by York-Simcoe MP Scot Davidson.
Meanwhile, their 21-year-old brother, Alex, has been diagnosed with Battens Disease CLN6, a rare neurodegenerative disorder.
Niki draws a great deal of inspiration from her siblings and remains an unwavering advocate for them, herself, and other people living with disabilities.
"I had to advocate for myself from a young age," she recalls. "In gym class, for example, if I couldn’t participate in a sport, I would communicate with my teacher to find a safe alternative” that she could do with friends.
Niki sees being named a 2023 ambassador for Easter Seals, an organization dedicated to improving the quality of life for people with disabilities, as a major turning point. She learned to speak publicly about her experiences, spreading awareness and advocating for those who often feel unseen. Lexi helps with the speeches and events, offering support while they work together to uplift others in their community.
It also helped her develop a deep sense of independence and leadership.
Niki has been involved in Bradford’s Impact Youth with Coun. Cheraldean Duhaney, which allowed her to develop invaluable skills in leadership and collaboration.
More recently, she was named to the town’s new youth council advisory committee, aimed at empowering young residents to actively participate in shaping their municipality. Through it, she has learned about her community’s history and how to make Bradford more accessible for people with disabilities.
“I wanted to learn more about council meetings and how to create a more accessible Bradford community,” Niki said. “I raised concerns about places that aren’t accessible.
“It’s important to think about accessibility, not just for me, but for others as well,” she emphasizes. “There’s still a lot of work to do.”
The lack of ramps, for instance, has proved problematic, sometimes forcing her onto the road.
Despite the challenges, Niki is determined to make a difference, with an eye to becoming a dermatologist in the future.
And while her term as youth ambassador with Easter Seals has ended, she remains dedicated to the organization to help further its mission.
Her presence on social media — on platforms like TikTok, Instagram, and YouTube — has become another outlet for her advocacy.
“When I was younger, I didn’t see anyone like me online,” she said. “I wanted someone I could relate to and look up to, especially as a girl in a wheelchair.”
Last summer, Niki was named Bradford’s junior citizen of the year. The award was presented by Coun. Joseph Giordano and it recognized her early contributions, which she is determined to continue.
“I’m very proud of both girls, and what they’re doing for the community,” says their mom, Gulghutai Tokhi, who, along with her husband, works full- and part-time jobs to help manage the many challenges their family faces.
Their daughters’ involvement, she adds, is not just about them but rather about raising awareness for others who have the same condition or similar struggles.
The family's journey has been far from easy. Her brother Alex, who is in palliative care, has become a driving force behind their mission to advocate for rare diseases.
“For all three of them, there is no cure,” their mother explains. “I’m hoping one day another Alex doesn’t die because of that.”
Niki sees the opportunities to make a difference through advocacy and is determined, not just to make change, but also to inspire others to achieve, no matter their challenges.
You can follow Niki on Instagram and TikTok (@niki.rihanna). Her sister, Lexi, is also on those platforms: @ga.lexi (Instagram) and @ga.lexii (TikTok).
