Believe In Brenna - this little girl requires urgent surgery

Dear Friends, Family, and Community Members,

I am “gramma” to the sweetest little girl you could ever meet. Brenna Benoit is a remarkable seven-year-old girl from Middle Sackville, Nova Scotia. Her parents Nora and Albert were born and raised in Antigonish, Nova Scotia and now live there with Brenna and her baby sister, Mara Quinn.

Brenna’s journey began when she was born at just 24 weeks gestation weighing just 1lb and 7 ounces and was brought to the NICU for care at the IWK hospital in Halifax.

While she showed incredible resilience in those early days, her 161-day stay was filled with challenges, including an incident where we almost lost her during a procedure. At 81 days she was diagnosed with meningitis not once, but twice!

Once home, Brenna’s parents noticed Brenna was not tracking properly with her eyes. This eventually led to a diagnosis of cortical visual impairment - which is a processing issue between the eyes and the brain. To support her visual development, they traveled to Pittsburgh to consult with Dr. Roman Lantzy- the expert in the field. With her guidance and her parents hard work and determination they were able to build Brenna’s vision from the ground up. However, their journey didn’t stop there. At just over one year of age Brenna was diagnosed with GMFCS lll cerebral palsy and dystonia, which has affected her muscle control and joint function. Cerebral Palsy is not a progressive condition but causes spasticity in the muscles and damage to the joints over time. Unfortunately, the healthcare system provides limited support for children like Brenna, leaving her family to navigate these large gaps in care.

The spasticity from her CP has caused her left hip to dislocate requiring urgent surgery. The surgery offered in Canada is designed to prevent and relieve chronic pain but it does not address or provide better mobility and function for the child. Brenna has worked hard to increase her mobility. She was standing and using the Levity to walk ( a new device developed by Ora Medical) when problems with her muscles and joints stopped her progress. Today she can no longer stand. We have discovered an innovative surgery in the United States, called the "café door" procedure, that enhances function and mobility while also resolving the chronic pain from her hip. Dr. Nuzzo who developed the surgery says that instead of six weeks lying prone following surgery, they will be able to move the hip during the surgery and physiotherapy and rehabilitation can start almost immediately. if you would like to view the Café Door Hip Surgery step by step you can google it- (but be careful it is actual pictures of the surgery- not for everyone). This means we can get Brenna fitted for new AFO’s (leg braces) and get her back on her feet. Dr. Nuzzo has scheduled the surgery for November 11, giving us as much time as he can to delay the surgery and to give us time to raise the funds. The cost of the surgery alone is $65,000 US which is about $85 thousand Canadian today. We need to pay for the surgery two weeks in advance so by October 28th . For this GO Fund Me we have added additional expenses to get her leg braces and the rehabilitation that must follow. We think we will need $100,000 for travel, AFOS and Rehabilitation.

While standing will help Brenna with her confidence and mental health by allowing her to be on the same level as her friends and family, even more importantly it will improve her overall health including her circulation, muscle strength, bowel and organ function, her sleep quality and her life expectancy. The choice presented by our healthcare system is disheartening: a chance for Brenna to live pain-free, but without the opportunity to stand or walk. We believe that every child deserves the best chance for the best possible outcome.

Brenna is a beautiful, spirited child who lights up when the school bus arrives, loves Ed Sheeran's music, enjoys horseback riding therapy, and eagerly learns new things in grade one. Her teacher recognizes her potential, and her parents have dedicated themselves to providing her with the best support possible. Their lives are focused on achieving the best life for Brenna, taking her to doctor appointments, occupational therapy, physical therapy, adaptive sports, speech therapy and the daily tasks that require assistance to complete. Her inability to stand means she must be lifted and carried when not in her wheelchair. Brenna loves to be able to do things on her own and these barriers are becoming more frustrating for her as she grows and matures.

We are reaching out to you, our community, to help support Brenna’s journey toward a better future. We are organizing a fundraiser to cover the costs of the surgery and associated therapies that will give her the chance to maintain her health at the best possible standard and to get her standing and walking again. Any contribution, no matter how small, will make a significant difference in Brenna’s life.

Thank you for taking the time to read Brenna’s story. Together, we can help her reach her full potential and live her best life. If you would like to donate or learn more about the fundraiser, please feel free to contact me at [email redacted]

With heartfelt gratitude,

Noreen Nunn

Brenna’s Gramma---