Turning to Instagram After Diagnosis

. October 1, 2019.
Photo Credit: Thomas Herring
Photo Credit: Thomas Herring

A Cerebral Palsy warrior raises awareness and spreads positivity online

When almost-five-year-old Briella Naif took 35 steps––the most she’d ever done without her walker––thousands of people were cheering her on. Her mom, Caroline Naif, shared a video of the feat on their Instagram account, @briellandme, and encouraging comments from over 11,000 followers flooded in.

Briella has Cerebral Palsy (CP), a muscle disorder that makes walking difficult, so those 35 steps were a huge accomplishment. CP occurs when the brain, because of damage or abnormal development, is unable to control a person’s muscles. In Briella’s case, her CP was caused by Periventricular Leukomalacia, a brain injury that affects premature babies.

Finding a community online

When she was almost two, Briella was diagnosed with CP. “After her diagnosis,” says Naif, “it was a good six months of struggling and not really having anyone to talk to about what our new normal would look like.”

That’s when Caroline started the @briellaandme Instagram account. “Starting the page saved me as a mom and it’s saved her,” she says. “We’ve connected with so many amazing people.”

Online, Naif shares pictures and videos of Briella alongside inspirational quotes and positive captions. She describes new therapy options and includes in-depth instructions for fun activities that help Briella practice fine motor skills or speech. The goal, says Naif, is to share their story to inspire others to live positively and vibrantly. “We’ve met kids with cerebral palsy, with Down syndrome, kids who are learning to talk and walk. We love following all those accounts because you learn so much from them and they’re so inspiring,” explains Naif.

Advocating for Briella

The Naifs spend a lot of time advocating for Briella to get the treatment she needs. According to Naif, there is no cure for CP, just options that help make life easier.

“We have learned a lot along the way by seeing what other CP warriors are doing for treatment options around the world,” says Naif. “It’s important to educate yourself!” Each case of CP is different which means no two treatment plans are the same. Doctors don’t always know about new or experimental treatments and insurance often doesn’t cover them. The Naifs look for grants or scholarship opportunities and they have a Gofundme page where supporters can donate money to help cover the costs.

Briella with her Dad, Matt, and Mom, Caroline, Naif. Photo Credit: Thomas Herring

Briella with her Dad, Matt, and Mom, Caroline, Naif. Photo Credit: Thomas Herring

Cerebral Palsy Warrior

Briella is a CP Warrior. “She’s living with CP, but that doesn’t stop her from doing anything. She’s showing the world that anything is possible,” says Naif with pride.

In addition to preschool, gymnastics, and swimming, Briella goes to physical, occupational, and speech therapy multiple times a week. The Naifs also practice home therapy together every single day. This busy schedule isn’t always fun for Briella, but despite it all, “she’s the smiliest girl ever,” says Naif. “She’s happy 98 percent of the time.”

Last year, Briella had a life-changing spinal surgery to reduce tightness in her muscles caused by her CP. This surgery made it possible for her to take her first independent steps. This summer, she spent a week at Smile Therapy for Kids in Ontario, Canada undergoing a physical therapy approach called Cuevas Medek Exercise (CME). After a lot of hard work in their intensive program, she was able to take those 35 steps. “I was blown away by what she did,” said Naif.

What’s Next

Right now, the Naifs are focusing on increasing Briella’s speech and communicative ability so she’ll be ready to start Kindergarten next fall.

She knows sign language and uses a Tobii Dynavox tablet to communicate. With a speech therapist, she works on pronouncing words and gaining confidence with her speech. The more she can communicate the more she can make her wants and needs known and advocate for herself. “We’re emphasizing confidence, independence, and mobility,” says Naif.

They’ll continue to share Briella’s story and focus on the community they’ve created. “We’re turning a diagnosis into a positive outlook on life,” says Naif.

To help the Naif’s with the cost of Briellas therapy visit gofundme.com/briellas-wish-to-walk.
Keep up with Briella’s journey by following @briellaandme on Instagram or check out #gobriellago on Instagram and Facebook.

The Naif’s recommend the CP Families of Michigan Facebook group (@CPFOM) for a community of people sharing CP support and advice.

Wear Green on October 6 for World Cerebral Palsy Day!