Rare, Remarkable, and Raising Awareness: Harper’s CTNNB1 Story
When you run a Canadian, values‑driven brand like Easy Peasy Tees, you meet families whose stories stay with you. Some stories change the way you think about awareness, community, and what it means to show up for one another. Harper’s story is one of those.
Harper is an eight‑year‑old girl from Cole Harbour, Nova Scotia, living with CTNNB1 syndrome, an ultra‑rare genetic disorder that affects mobility, development, and speech. For years, she was misdiagnosed with cerebral palsy, even though her scans showed no brain damage. Her mother, Tara, refused to stop searching for answers — and eventually, genetic testing revealed the truth.
Recently, Harper’s journey has been featured nationally — first through CP24, and then through CBC News, bringing unprecedented visibility to CTNNB1 syndrome and the families affected by it. The coverage highlighted both the challenges and the extraordinary hope ahead: Harper will travel to Slovenia to participate in a gene‑replacement therapy trial, becoming one of the first children in the world to do so.
And thanks to national support, the Tanton family has now raised the full amount needed for Harper’s treatment and travel.
For Tara, this moment represents something she hasn’t had in years: real hope.
💜 Purple Day: A School Community Standing Behind Harper
As Harper’s school year came to an end, her elementary school held a Purple Day — a full‑school event dedicated to raising awareness for CTNNB1 syndrome and celebrating Harper.
“The school is absolutely amazing,” Tara shared.
Local MLAs attended to show their support, and the Tanton family wanted every child to have something meaningful to remember Harper by. So they partnered with Easy Peasy Tees to create a special Purple Day tee — designed, printed, and shipped in time for the event.
We printed through the night to ensure all 230 students received their shirts before Purple Day. Because we care. And because we understand how important it is for a child to feel seen, supported, and surrounded by community.
Purple is Harper’s favourite colour, and the tee features a dragonfly, the symbol chosen years ago by the CTNNB1 Foundation. The dragonfly represents transition and transformation — a perfect reflection of the hope this treatment brings.
With Harper preparing to spend months in Slovenia and miss her Grade 4 year, Tara wanted every child to have something that would help them remember her, reflect on her journey, and stay connected to her story.
🌟 A Collaboration Rooted in Hope and Awareness
When Tara reached out to Easy Peasy Tees, she wasn’t just looking for a shirt. She was looking for a way to help people understand CTNNB1, and to create something that would make Harper feel seen.
She worked directly with Kaleb, our resident Calgary artist, to design a tee that reflects the heart of CTNNB1 awareness. Together, they created a piece that celebrates rarity, resilience, and the remarkable strength found in families navigating rare genetic disorders.
This tee isn’t only about CTNNB1. It’s about every rare genetic disorder, and the thousands of families across Canada who are still searching for answers, support, and visibility.
💙 A Community Emerging From the Shadows
One of the most powerful outcomes of the CBC and CP24 coverage has been the way families across Canada have come forward.
Parents reached out to Tara to say their child also has CTNNB1 — even families living in the same province who had no idea others existed. For a condition this rare, connection is everything.
This is why Tara founded the CTNNB1 Syndrome Society: to bring families together, to build community, and to continue supporting research and treatment for these remarkable kids.
National visibility didn’t just raise funds. It built a community.
🍁 Why This Tee Matters
At Easy Peasy Tees, every awareness‑day design is created, printed, and shipped within Canada. We partner with Canadian artists, use a Canadian supply chain, and prioritize sustainability so that every tee does more than raise awareness, it reflects the values of intentional parents who want to raise good humans.
This CTNNB1 awareness tee is part of that mission.
- It sparks conversations.
- It builds understanding.
- It helps families feel less alone.
- And it gives back.
A portion of proceeds supports the Canadian CTNNB1 Foundation, helping fund advocacy, community support, and future research.
🌱 Our Commitment: CTNNB1 in the Permanent Catalogue
Because awareness shouldn’t be temporary, Easy Peasy Tees is adding CTNNB1 to our permanent catalogue. The Rare & Remarkable tee will remain available year‑round so we can continue:
- raising awareness for rare diseases
- supporting families navigating CTNNB1
- contributing a portion of proceeds to the Canadian CTNNB1 Foundation
Every tee helps ensure that rare doesn’t mean invisible.
💛 Join Us in Raising Awareness
If you’d like to support CTNNB1 awareness — and awareness for all rare genetic disorders — you can explore the tee created in collaboration with Tara and Kaleb. Every purchase helps support the Canadian CTNNB1 Foundation and brings visibility to families who need it most.