Editor’s Note: In 2014, Michigan residents Caroline Booth and Matt Naif welcomed their daughter into the world six weeks prematurely. After some time in the neonatal intensive care unit, they left the hospital thinking baby Briella was ready to settle into home life in good health. A year and a half later, some concern arose when the new parents noticed she wasn’t hitting all of her milestones. Tests confirmed periventricular leukomalacia and cerebral palsy — the former likely the cause of the latter. Since then, when not at doctor visits, therapy sessions, or working, Caroline devotes her time to educating herself about cerebral palsy and promoting disability awareness through social media. She recently chatted with Wheel:Life writer Betsy Bailey about Briella’s heartening approach to being a toddler with CP and how Freedom Concepts and Variety the Children’s Charity Detroit helped bring hope for an adventure-filled, inclusive childhood.
Briella has the spastic quadriplegia form of cerebral palsy. Spasticity causes stiffness in her body which affects range of motion and makes it difficult for her to walk. After being evaluated by a neurosurgeon, Briella was approved for selective dorsal rhizotomy (SDR) and will undergo surgery this summer. A lot of adult patients with cerebral palsy live in chronic pain due to the effects of spasticity over the years. Essentially, SDR will give Briella a better chance of unassisted walking one day. That’s the ultimate goal for us.
This will be a big year for her. Go, Briella, go!
Editor’s Note: For more information on selective dorsal rhizotomy, visit the Center for Cerebral Palsy Spasticity page on the St. Louis Children’s Hospital website.
Sharing Our Story
When we got Briella’s diagnosis, we didn’t know much about periventricular leukomalacia or cerebral palsy. As parents, we ask ourselves every day how to make the best possible life for our daughter. I’ve done so much research on treatment options and extra therapies that I decided to start a Facebook page called Briella + Me to share our story and possibly help other parents going through similar situations.
The Costs of Giving Children a Chance
Briella’s doctor is recommending several intensive physical therapy sessions per week post-surgery, but our insurance only covers 30 visits per year. Many parents of children with disabilities cannot hold full-time jobs, myself included, due to the time constraints of regular doctor visits, physical therapy sessions, and other appointments. How can we be expected to afford these extra visits that are so critical for setting our children up for success later in life? To help our family with those costs, I created a GoFundMe campaign. We are also hoping to raise enough funds for stem cell therapy which has been producing amazing results in children with cerebral palsy.
Editor’s Note: To contribute to Caroline’s campaign and learn more about Briella’s prospective stem cell therapy treatment, visit the family’s GoFundMe page.
Briella’s biggest obstacle is the development of gross motor skills. She is unable to walk on her own and wears ankle braces to aid with balance. She also has apraxia of speech, so even though she is three and a half years old, she can only say a handful of words. Trying to figure out what she wants when she is clearly frustrated is a big challenge, so we’ve been doing sign language with her. Cognitively, she is smart. She can point to things; she knows her colors and shapes. She just can’t get those thoughts out into speech. We are also still working on potty training.
Despite these hurdles, she is pretty happy all the time. She smiles a lot and enjoys arts and crafts. At school, she’s very social and loves to play.
Pedaling Toward Freedom
On Instagram, I follow a woman who had posted a photo of her daughter on a Freedom Concepts bike. After doing some research, I thought it’d be so amazing for Briella to have a therapy bike. I sent an inquiry email to Freedom Concepts and they wrote back with some questions for me about Briella’s measurements and her physical abilities and then put a quote together for me. A custom-made bike is quite pricey, and I was surprised to find out that health insurance doesn’t cover any of it. This is something that is crucial for kids with cerebral palsy, not only for inclusion, but for recovery after surgery, working on flexibility and range of motion, and just getting exercise. I was a little discouraged because we didn’t have the resources for a therapy bike and we were already trying to raise money for her physical therapy sessions following her upcoming surgery.
Dave Burton, the representative from Freedom Concepts I had been in communication with, suggested reaching out to Variety the Children’s Charity Detroit. When I emailed them to share our story, the executive director, Michelle Murphy, sent me some paperwork to apply for assistance getting a bike. Soon after submitting the application, Michelle wrote me back saying Variety was going to sponsor Briella for a bike. I cried that day. It was so amazing. I just balled. When the bike showed up a few weeks later, I cried again. There are people out there who care!
The smile on Briella’s face when she saw the bike was just awesome. I’ll never forget.
I cannot thank Variety and Freedom Concepts enough.
“Variety the Children’s Charity of Detroit is dedicated to enabling mobility for children with special needs through the Variety Bikes for Kids Program. With generous support from donors, Variety provides a select number of prescriptively modified adaptive bikes each year which allow children to experience therapeutic benefits while enjoying independence and freedom. We are so pleased to see Briella conquering challenges with her new bike — and always with a smile.” -Michelle Murphy, Executive Director, Variety the Children’s Charity Detroit
Cruising Around the Block
Briella has the DCP 12 model in her favorite color, purple. She’ll be able to continue using it for several years as she grows. Everything adjusts on it from the height of the seat, to the handlebar placement, to the straps and harnesses.
She’s very secure in it, so I don’t have to worry about her falling out.
There’s a function on it that allows my husband or I to push it, steer, and even brake from behind. Once she gets good at learning to ride and pedal by herself, that can come off and she can cruise on her own. It’s pretty awesome how adaptive it is and how much she’ll be able to use it and grow with it. We just got it in February, so we haven’t been able to take her out much yet because of the winter weather in Michigan. I took her around the block once and she actually began pedaling a little bit! I can’t wait to take her back out as soon as the weather warms up.
The Importance of Inclusion
Now that she has the therapy bike, she will be able to participate in adventures and activities and feel more included among her peers.
This is not only vital to her well-being, but it also shows the outside world the importance of being adaptable and open-minded toward kids with disabilities.
“At Freedom Concepts, our greatest Joy is creating custom bikes that really capture the uniqueness of each child we serve. Our Freedom riders beam with pride while getting active in their neighborhoods, and it’s always so amazing to hear about local kids celebrating the rider as they are out finding their Freedom on sidewalks across the world.” -Dave Burton, Territory Manager, Freedom Concepts
To find out how Freedom Concepts can help your child gain freedom and independence, fill out the “How To Buy” form by scrolling down to the bottom of FreedomConcepts.com.
Betsy Bailey has a diverse background including experience in marketing research at American Express, business operations and client relations with 601am, travel and culinary writing with VegDining, and playing volleyball professionally overseas.
Betsy is excited to get back into writing, something she’s adored since childhood, and thoroughly enjoys the process of getting to know her interviewees. On top of her work with Wheel:Life, she also teaches students learning English as a second language, speaks French fluently, and travels any chance she gets!