Lucy Scholten is a beautiful girl: long, thick, dark eyelashes; a big, round face; long limbs. She has grown considerably in the few years I have known her folks.
She is becoming a young lady.
Describing Lucy Scholten is a delicate task.
She is, after all, someone’s daughter and as precious as any daughter comes to us.
What deeply complicates Lucy’s family dynamic — yet catapults Lucy’s parents Chad and Nicole into action — is that Lucy lives with an “umbrella” diagnosis of cerebral palsy; however, it is merely an oversimplified familiar term used to talk about Lucy’s much-more complicated medical status and the specific ways that status affects Lucy’s daily life.
Lucy’s vision “was the first thing we looked into, because that’s the first thing a kid will show you,” Nicole explains when I ask if Lucy is also blind. The Scholtens took Lucy for an MRI, and between three and six months they went to the Cincinnati Association for the Blind and Visually Impaired where they were told Lucy had cortical visual impairment, meaning, “She’s less likely to use her vision because it’s incredibly hard for her,” says Nicole.
The MRI revealed intricacies about Lucy’s brain that would later help the Scholtens piece together Lucy’s limitations and her capabilities.
“Her brain circumference wasn’t growing. We discovered the thing about the cerebellum when we had the MRI. Lucy was born without a cerebellum,” Nicole tells me in the coffee shop a block from my apartment. It is a bright, sunny, pre-summer day, a day when other kids are swimming, hanging out with friends or maybe being dropped off at the mall.
Lucy is at a nearby day camp.
Nicole’s tone is so clear and matter-of-fact, without one crack of emotion or disappointment. It strikes me that in the potentially thousands of interviews I’ve done, I’ve never encountered someone so concise, precise and even-keeled.
“A cerebellum controls how she moves,” Nicole says. “Her brain has the ability to adapt that information and re-route it … a brain that is not formed is ripe for a seizure disorder.”
The Scholtens learned during Lucy’s infancy that her movements were considered infantile spasms.
Lucy endures hundreds of seizures a day, and sometimes upward of 200 to 300. My favorite thing to do when I greet Lucy is to caress the tops of her exposed feet. I have seen Lucy wriggle and squirm, and Nicole later told me those were seizures.
“Your brain doesn’t get a chance to learn any other way,” Nicole says.
Given this, the Scholtens, married 15 years and more now like a team than a couple, might some days long for that regular rollercoaster ride of raising a tween-aged girl on the cusp of hormones, menstruation, discovering boys and the mortal coil of social media.
Lucy, though, is an 11-year-old girl frozen inside her own body like a bee in amber; she is non-verbal, non-ambulatory.
Her chair is a big, honking piece of machinery that Lucy can fully recline in with blankets. Her father, a gifted contractor, has retrofitted their Northside loft with an elevator, and the bathroom is a spa-cum-rehab facility with pullies and counter levers so Lucy can be raised and lowered into the bath and onto the toilet.
Her bones are dense.
Her movements can sometimes signal seizures.
And like any mother fighting for the literal health, well-being and comfort of her child, Nicole Scholten is now a self-taught scientist.
But the science came mystically.
About two years ago, when Chad had Lucy in Washington Park for Yoga, a Yogi whispered “I love you” in Chad’s ear, and Chad later wrote about the encounter on Facebook, resisting his natural inclination to just walk away.
Chad and the Yogi became Facebook friends, and the Yogi began posting links to stories about young girls with disabilities who were getting physical relief from the use of medical marijuana.
“Well, of course, I clicked on that one,” Nicole says.
Nicole says families like hers have tried dozens of “terrible, invasive” anti-epileptic medications.
“They slow your brain down,” she says. “The most recent anti-epileptic medication Lucy tried — ONFI (also known as clobazam) — we stayed with it because it took her seizures from this much” (she holds her arms wide apart) “to this much” (she brings her arms closer together).
“And we were happy to have it.”
This has been a motherload of background information simply to tell you how desperate the Scholtens are — and countless families like them — to reform the laws governing the availability and distribution of medical-grade marijuana for use by their chronically ill and sometimes debilitated children.
In August 2014, Nicole joined Ohio Families CANN, a group comprising 54 families “with catastrophically ill children for whom current treatments are ineffective,” according to the group’s literature.
Nicole, now the group’s co-director, has twice traveled to Colorado — the nation’s test case for legalized marijuana where many growers help families like the Scholtens by supplying them with marijuana oil with differing intensity levels of THC according to their children’s illnesses — for lobbying events.
She’s been a dozen times to Columbus to talk to legislators largely put off by the use of the word “marijuana.”
“We’ve been educating our lawmakers, talking to people in the Senate and the House,” she says. “It’s astounding how little people understand.”
It looks like a long, drought-ridden road ahead for the families, perhaps because of the language used by other Ohio groups — the ones with questionable-looking folks with clipboards in Clifton — who simply want access to weed and not whole-plant medical cannabis.
“Legalization does not equal safe, sustainable, lab-quality medicine,” Nicole says. “We feel our lawmakers are best suited to supply medicine. We don’t have any designs on the avenue — the pathway to secure medicine. We’re going to take a hard look at safe, sustainable medicine.”
What a fantastic relief that would be for Lucy, who’s been on 10 anti-epileptic medications and undergone two invasive treatments, including the insertion of a vagus nerve stimulator, a pacemaker-like contraption that wraps around the bundle of cranial nerves that stimulates the heart, lungs and the upper digestive tract. Her stimulator is now de-activated.
“Patients are people who could be benefited if medical cannabis were legal in Ohio,” Nicole says. “The lives of Ohio Families CANN and my child’s life would be greatly improved today. The federal government really needs to get involved.
“There are powerful people who could help us who throw up issues like, ‘Well, the FDA …’ or ‘Well, research…’ I come back to: Well, listen, the 10 medications my child has taken have never been tested on 11-year-olds.”
CONTACT KATHY Y. WILSON: letters@citybeat.com
This article appears in Jul 15-21, 2015.