“I’m a rock star!” shouts Ellie Schleyer, striking a pose as part of an impromptu runway show.
The 11-year-old spins and dances down the staircase and through the kitchen of her family’s home in Fairfax Station, bursting with enthusiasm for fashion, unicorns and glitter.
For Ellie, though, glitter is not only the sparkle evident in her fashion choices, but the name she has given to the white matter in her brain. Right now, her white matter is inflamed, under attack from her own body.
Yet while doctors discovered this problem more than three years ago, they have yet to find the cause. So far, a barrage of different treatments have been able to slow the inflammation, but a diagnosis and a cure remain elusive.
The mystery disease has slowed Ellie’s cognitive development, but not her vibrant personality. Well, “vibrant” is how her mother Stephanie Schleyer puts it. Her four siblings are partial to the term “crazy.”
“In a good way, of course,” says Amanda, at 18 the oldest of the group.
Sitting at the dinner table, Ellie delights in the adjective, laughing as her three brothers, two older and one younger, also defend their chosen descriptor. She also supplies some of her own.
“Imaginative, creative, artistic,” she ticks off, smiling, not one for false modesty.
Today is a good day, Stephanie Schleyer says later, watching as Ellie and two of her friends chase each other through the halls. Ellie has gone to her cousin’s band concert, played board games with her brothers and held one of her famous fashion shows, all with little sign of the fatigue that can plague her. And now Stephanie and her husband David are clearing the dinner plates and setting up Christmas crafts.
“We really go after it when the good days are here and don’t hold back,” Stephanie said, “because we know the bad days are coming.”
Ellie’s disease can manifest in flagging energy, speech impairments, drooping facial muscles and even seizures. She takes daily medication to keep these at bay.
“Right now, we’re only treating the physical symptoms so she doesn’t go into a downward spiral,” Stephanie said. “Anything else we try will carry a pretty hefty risk.”
Experimental treatments often leave Ellie weak and in pain, making them difficult for Ellie’s family to stomach.
“But if we don’t take chances now, there may not be several years from now,” Stephanie said. “So is there even a choice?”
The Schleyers first discovered that something was wrong with Ellie in August 2010.
While on a family vacation to the Outer Banks in North Carolina, Ellie started complaining of dizziness. Expecting an easily diagnosed ear infection, they went to a beach clinic, only to be sent immediately to the Children’s Hospital of The King’s Daughters in Norfolk for in-depth tests.
Since then, Ellie has become a regular at Children’s National Medical Center in Washington, D.C., and has seen specialists at the Mayo Clinic in Minnesota and at the Children’s Hospital of Philadelphia. But Ellie’s medical condition remains a mystery.
“You get that look from the doctor, that look that says, ‘I don’t know,’” David Schleyer said. “It’s a punch in the gut every time.”
In search for answers, Ellie has had more MRIs than her parents can count, several spinal taps, two brain biopsies and a lung biopsy. She has gone through chemotherapy treatment that put her in the hospital for 12 days.
Right now, Ellie continues to go for monthly treatments at CNMC. She takes medicine, some in pills, some pumped directly through a medical port in her chest. But mostly, she and her family wait for the next treatment idea. Doctors, still scratching their heads, have told them they must wait until science catches up with Ellie.
“As a parent, it’s devastating,” David said. “It’s your child. You can’t wait for science to catch up.”
The Schleyers have lifted themselves up from seemingly hopeless situations before.
Last September, Ellie’s medical bills had left the family bankrupt, and they lost their home. With help from their community, they are now back on their feet. Seeing how the community rallied to help them, they decided to harness that energy.
David and Stephanie started GlitterMatters.com, a portal where people can raise money to help with the family’s medical bills and also help raise funds to help Ellie’s doctors find new treatments. With the help of their Glitter Matters team, full of friends looking to pitch in, they hope to raise $60,000 for Ellie’s medical expenses and $240,000 for research in 2014.
Like Ellie, David and Stephanie have good days and bad days, days when they believe anything is possible and days they would rather stay in bed. Still, looking to Ellie, they find hope.
“When I want to tap out, I see her smiling, always looking to make other people happy,” David said. “And then I pick myself back up.”