Family and community come together to help a local girl battling a dangerous neurological condition
Elouise Sloan, 12, sits in her wheelchair at a table at the Manor Country Club, smiling. People come up to her to banter, compliment her on her pink dress, or talk to her about her favorite artist, Bruno Mars.
She is happy and surrounded by family and neighbors.
Those family and neighbors are the ones who organized a golf and silent auction fundraising event to help fund research for the foundation her parents created: The Foundation to Fight H-ABC. In starting it, her parents hoped to find a cure for her progressive neurological condition H-ABC, hypomyelination with atrophy of basal ganglia and cerebellum.
Her parents hope to prevent further damage, but the damage already done to her brain is irreversible. Already, her speech is limited.
“The prognosis is not good,” said her mother, Michele Sloan. “Most of these kids don’t live past twenty.”
Elouise began her life seemingly healthy, but around the age of three started having problems moving her arms. The problems have only worsened since then, and many around her have noticed.
“She has drastically declined since kindergarten.” – said Vanessa Provencher, a board member on Charity’s angels, an organization made up of local women who have adopted Elouise’s cause and the foundation her parents started.
Her parents initially thought she had a stroke. There were multiple incorrect diagnoses. Elouise’s mom said her daughter was only diagnosed after the disease was identified within the scientific and medical community.
The disease causes her to have, among other symptoms, muscle spasms, which have been powerful enough in the past to dislocate her hip, Michele Sloan.
Her therapy dog, with whom she watches the Disney Channel Show “Dog With A Blog” and her parents, with whom she spends most of her time are a huge part of Elouise’s support system, although it is hard for her parents to see how she interacts with children her own age.
“Friends can’t stay awhile,” said Elouise’s dad, Britt Sloan. Eloise can’t run around or play with them, he said. Her parents say that she has no close friends.
“I just want her to live a normal life,” said Michele Sloan.
But at 12 years old, an age where most kids are beginning to negotiate for greater independence and are beginning to be exposed to more mature media, Elouise is never left alone and she does not watch movies or T.V. shows that contain violence or other unhappy ideas.
“I don’t come home at six and tell my kid to play in the yard,” said Britt Sloan.
He or someone else has to be out with Elouise.
Yet, the family’s daily experiences are not all bad.
“Our life is filled with happy moments,” said Britt Sloan. “They’re just totally different.”
For example, last year at a similar event, her dad lifted Elouise out of her wheelchair and the two of them danced. This year, she’s too big.
Getting too big to do childhood things is a bittersweet hallmark of puberty, one that leads the way to different opportunities. But for Elouise, the older she gets, the more her brain is harmed and the disease that has caused her to arrive at this moment will only worsen.
Britt Sloan said there a lot of challenges with communicating with his daughter. “Communication is difficult because of her speech. She can get frustrated,” he said.
Britt and Michele Sloan said they also find difficulty in caring for their daughter while simultaneously raising money to fund what Britt Sloan described as a “lengthy process” towards finding the cure.
“I have a 60-hour-a-week job, my wife also,” said Britt Sloan. “We’re just like everybody else. We’re normal Americans and had [Elouise’s condition] thrust upon us.”
Thankfully, they have the support of a close-knit community. A year and a half ago, the Sloan family made the decision to tell their neighborhood about their situation, and many in the community responded to their vulnerability.
“It just hits home, we’re all parents,” said Provencher.
That sentiment has led to the multi-generational effort to put on Play for Elouise, a golf fundraiser at the Manor Country Club. Local children earned SSL hours for handing out flyers. Adults in the community donated wine and baskets for the silent auction.
However, that kind of generosity does not come easy for Elouise’s father.
Elouise’s father also had to get used to running a foundation with his wife, a new venture for both of them.
There’s “no instructor book,” he said.
Despite that, Elouise’s parents remain committed to saving their daughter.
“Just doing everything we know how to do,” said her father.