Discover the remarkable journey of BellaBrave, a young advocate who defies the odds with strength and courage. Through her rare medical conditions, surgeries, and a life-saving transplant, Bella and her family share a message of hope, positivity, and empowerment for all facing challenges.
Bella’s story has touched so many lives. For those who might be new to Bella’s journey, could you give us a brief overview of her story?
For those new to Bella, she is best known as BellaBrave. My daughter has needed to live in hospital for many long-term stays due to the rare conditions she was born with; Long Segment Hirschsprung’s disease, dwarfism and Severe Combined Immunodeficiency. After being listed for transplant in 2020 due to bowel failure and loss of vascular access, Bella recently received her life saving bowel transplant and is currently recovering at SickKids Hospital in Toronto, Canada.
Your advocacy is powerful. In sharing Bella and your family’s experiences, what message or insights do you hope to convey to the public?
We hope to inspire others by setting a good example — to stretch and to grow, just for the fun of it. Our social media just kept growing and growing and growing. We’ve been guided by a lot of forces around us. We were intrigued about the art of social media. We were just trying to make people happy, and that’s how we got started. That’s all.
Bella’s journey is an inspiration. Can you share an instance where Bella’s strength and resilience have amazed you?
Bella has gone through roughly 30 surgeries in her 9 years of life so far. Some have been very emergent and scary and other planned. But for everyone she has never been fearful or scared. This truly amazes me. She is so smart and fully knows how each procedure benefits her or helps her and she focuses on that. She brings positivity to situations where average kiddos would most likely be crying in fear.
How do you and your family find positivity and hope in challenging moments, and how can others learn from this perspective?
It is very important to me to sustain my hope with verbal positivity. When I speak or type I am very careful not to focus on the ‘what ifs’ or worries but instead affirm positive outcomes with how I speak to others or explain updates on social media. I have strong faith and I don’t want any room for fear to think in can sneak in to my mind nor my daughter’s. I think of it as a way to protect our hearts and minds when going through difficult situations.
BellaBrave has grown into a movement. What advice would you give to other families navigating challenges?
I hope our story can uplift and support other families/people like us. I hope that my daughter can portray what it means to be brave and in turn that helps other kiddos get through real hard things. And as a movement, my hope is that people in similar situations gain more support because our BellaBrave movement has helped this world better understanding what kids and families with rare disease go through.
Bella, what is one exciting or memorable moment that stands out for you?
Bella: ” When the famous singer Halsey sent me a gift. She recently messaged my mom after hearing about my bowel transplant and wants to send me another care-package. So I am excited for that. ”
