Smithfield, RI Weather
By Paul Lonardo
Like other girls her age, Brooke Reynolds, who everyone calls Brookie, loves doing her dolls’ makeup, laughing and being around her many little friends. But Brookie is different from most children.
At nine months old, Brookie was diagnosed with spastic quadriplegia, a term that frightened Brookie’s mother, Allison, a former special needs teacher, when it was spoken for the first time by a neurologist. She had never heard of the condition, and there admittedly was a bit of denial early on, despite a noticeable delay in the motor and sensory functions in her infant daughter’s arms and legs, which had prompted the visit to the specialist.
“When she was about seven months,” Allison says, “we noticed that Brookie wasn’t hitting her milestones, and I just knew something wasn’t right.”
Allison immediately made an appointment with the neurologist, believing her daughter’s problem was nothing more than low muscle tone because Brookie had been born full term with no apparent problems. A second opinion confirmed the diagnosis, and a new reality awaited the Reynolds family.
Spastic quadriplegia is one of the more severe forms of Cerebral palsy (CP) that affects all four limbs. CP is a non-progressive developmental disorder, the most common movement disorder in children, affecting about 1 in every 300 children. Spastic quadriplegia is generally caused by brain damage or disruptions in normal brain development preceding birth, or as a result of various complications during childbirth, such as prematurity, insufficient oxygen and low birthweight. The disorder can be detected by the abnormal development of motor skills in children. Symptoms can present themselves as early as three months but are generally seen before the child reaches 2 years of age. Some warning signs include a child of more than two months who has stiff legs that scissor and is unable to control his or her head, and a child of more than 12 months who has not developed the ability to crawl or stand.
One of the things that Allison wants people to understand about CP is that while symptoms may get more noticeable over the first few years of life, the underlying problems do not worsen over time.
“Signs, symptoms and severity vary from child to child with CP,” Allison says. “With Brookie, she is non-verbal, but anybody that meets her, understands her within a few minutes, because she is smart as a whip. She understands everything, and uses her eyes to communicate. She also points and makes different noises. She uses a speech device to talk at school.”
Brookie, who turns six in April , just wants to be like everybody else. She goes to dance classes and plays hide-and-seek with her older brother, Tyler, who she idolizes. She chases him and the other kids around the neighborhood in her power chair.
“What everyone needs to realize is that although some people may be different on the outside, on the inside we are all very much alike,” Allison says. “That’s important, and I think little ones understand it most of all.”
Brookie lives in Cumberland with her mom, Allison, her dad, Dan and her brother, Tyler. Together they are an incredibly strong and inspirational family.
“Tyler is Brookie’s hero,” Allison says. “When I first learned about her condition, I felt sad that the two of them wouldn’t have a typical sibling relationship, but they really are best friends, and he has become a more sensitive kid because of Brookie, which makes me realize that there is always a silver lining in every dark cloud.”
Allison wants other mothers and families dealing with cerebral palsy, in all its forms, to understand that there is a light at the end of the tunnel. Everything changed when she stopped feeling sorry for Brookie and got actively involved, taking life day by day.
“I was in a really dark place for the first year,” she says. “I came out of it when I decided to start a private group on Facebook for parents with children who have cerebral palsy. In two years it has grown to more than 7,000 members, and is rated a Top 40 support group on Facebook. It became my personal therapy, and the people involved have become my second family.”
Moms from all over the world get together once a year for a CP Mom’s Retreat. Allison also started the Smiles for Brookie page as a way of advocating and spreading awareness around the world about cerebral palsy, while at the same time keeping the network informed about Brookie’s progress. But it has been through Allison and her husband’s families that she found the ability to draw strength, and she considers herself very fortunate to have such a huge support system.
“The hardest thing about CP is that everything is the unknown,” Allison says. “It’s OK to ask for help. It’s OK to be sad. I always say, you really need to work as a team. When one person is having a mental breakdown, you have to be stronger for that other person.”
On top of the emotional toll, CP is an expensive disability, and the financial challenges can be as overwhelming. Allison counts her blessings there, as well. Brookie has undergone numerous operations, endless treatments and therapies, many of which are private. She has been fitted with mechanical devices, and prescribed various medicine and drug therapies through the years. Insurance doesn’t cover everything, but so many people, locally and around the world have gotten involved to help organize fundraisers and donating their time and money that the Reynolds family has been able to provide Brookie with everything she needs.
“Without everyone, I don’t know where we would be,” Allison says. “There would have been operations that Brookie would never have been able to have if it wasn’t for all the compassionate and generous people.”
“Impossible is Nothing” is an adopted family motto the Reynolds family prescribes to and fully believes.
Brookie faces challenges on a daily basis to accomplish tasks that most parents and children take for granted, but with strength and a positive attitude of her family behind her, and the love and support of so many people, this incredibly bright, adorable, treasured little girl will continue to have access to the resources and treatments that will assist in improving her development and allow her to live the best life possible.
“It’s hard, it’s always a struggle, but you never stop fighting for your child, no matter what,” Allison says. “You have to think outside the box, find every therapy that you possibly can, whether traditional or nontraditional, always researching. Most important is never giving up hope, and if you can do that, you’re not just trying to get through the days anymore, you’re actually enjoying the days. And that’s what life is all about.”
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