The Struggle Is Real for Those With Cerebral Palsy, but One Brave Girl Refuses to Give Up
Lifestyle| | By Lauren Boudreau
March 25 marks National Cerebral Palsy Day to bring attention to the congenital disorder that is the most common motor disability in children. It affects about three out of every 1,000 live births in the United States. Currently, there are approximately 764,000 people living with cerebral palsy in the U.S., according to CerebralPalsy.org.
Four-year-old Brooke Taylor Reynolds is one of those people.
Back in October, for World CP (cerebral palsy) Day, Allison Reynolds wrote an emotional first-hand account of her and her daughter’s struggle with cerebral palsy. Today, the struggle continues, and despite the prevalence of cerebral palsy in children and adults, Reynolds says that there is “literally no funding.”
Brooke, or Brookie as she’s lovingly known, is four and about to enter kindergarten. She is small enough that she can still be easily moved, but is rapidly approaching a day when she and her equipment will need more than just her parent’s help.
“She’s getting bigger and likes to bring her power chair to school,” Reynolds told Your Daily Dish. Brookie’s power chair gives her autonomy. Reynolds says she loves using the chair to go outside and play with other kids because it allows her to move and keep up.
However, Allison also says she’s one of the lucky ones when it comes to access to equipment because the equipment is one of the few things covered by her insurance. Many other parents, she says, don’t even have that basic need met.
“Some people fight for equipment,” Reynolds says. “Everything is a fight with CP.”
There is no cure for cerebral palsy and no known way to prevent it. There is no federal funding to research the disorder even though Reaching for the Stars indicated that the National Institutes of Health devoted four times more NIH funding for the research of other disorders that affect less than half as many people as those living with CP.
“And when they (children) turn 20, forget about it. Nothing is covered,” Reynolds says.
In fact, some of the only treatments that Brookie likes and responds to are not covered. This puts a huge financial burden on the family and all families living with CP.
Reaching for the Stars estimated that the average direct cost of one person living with CP is upwards of $1.5 million above someone living an average life in the United States.
In May, Reynolds plans to have a fundraiser with some of her friends to help cover the cost of a handicap accessible van. The amount they’re trying to raise is around $60,000, but she says it’s absolutely necessary.
When thinking about the future, Reynolds says she can’t, really, because “I go into a dark hole.”
“I have to live every day minute by minute.”
Despite the hardships, Reynolds says she’s one of the lucky ones, as she has a supportive husband who is active in rearing their children. Reynolds claims some men leave once they find out they have a child with a disorder.
“So many moms got divorced because their husbands didn’t want to deal with it,” she says. “Many women are on their own.”
So, Reynolds created a support group called CP Warriors, Mommies, Daddies, Grandparents and Caregivers where people can “vent, brag, tell all our amazing stories about our munchkins living with CP.” Started a couple years ago, the group has now grown to over 5,000 members and Reynolds says it’s become like a second family. She is even going to meet 32 moms for a CP retreat.
“Our family motto is ‘Impossible is nothing,'” she says. Despite all the challenges and lack of funding, Reynolds wants people to know how genuinely happy Brookie is. Brookie can’t speak or strongly communicate with others because her body doesn’t allow her to. However, Reynolds says that doesn’t mean she’s not intelligent.
“She’s really smart, but in this infant body.”
This is is a major struggle kids with CP have – they want to communicate and participate, but just can’t. Reynolds says it’s also a major misconception people have.
“People see these kids that are non-verbal, move different, look different, but it doesn’t mean they’re not intelligent.”
Reynolds and her family just want everyone to be treated equally. They’re constantly fighting, as most families are, to get people to look past the CP.
“If you see someone in a wheelchair or a walker, take the time to look past the CP,” she says. It will always be a struggle, but Brookie and her family are prepared to fight the good fight for as long as it takes.
The lack of funding, research, and government support is one thing, but Brookie and Reynolds are determined to not let it get them down. They will always still be fighting and smiling. “She is just amazing,” Reynolds says.