By Brandon HENSLEY
At first, it was a blur. Misty Harlan’s emotions were all over the place in 2011 when doctors told her the news. Of course, being a new mother, what was she to think? Her daughter, just 6 months old, was given less than a year to live by the neurosurgeon.
So Harlan changed doctors at UCLA Mattel Children’s Hospital and found a new team to rally around her. Then daily seizures started – up to 100 – and Harlan’s life hasn’t been the same since.
Novalee is the name of Natalie Portman’s character in the 2000 movie “Where the Heart Is.” Harlan saw the movie and kept that name in her head, and when her daughter was born four years ago, there was her chance to use it.
Novalee began showing problematic signs just five months after her birth. She was diagnosed with lissencephaly, a rare brain malformation in which there are no normal ridges in the cerebral cortex. She was also diagnosed with Microcephaly, where the circumference of the head is smaller than normal because the brain has not developed properly, as well as cortical vision impairment. Symptoms of Novalee’s condition include infantile spasms, psychomotor retardation and the aforementioned seizures.
Harlan has had a nurse since October who works shifts in the afternoon and evenings. Harlan comes home in the early afternoon from her shift at Vons. At night, she is never more than eight feet away from Novalee, and a normal night’s sleep is something that simply never happens.
“You’re a mom. You do what you have to do,” she said. “I don’t have another choice so I just do it. I don’t think anything we’ve done has been hard.”
Harlan’s first neurosurgeon wasn’t exactly wrong about life expectancy. The National Institute of Neurological Disorders and Stroke reports the prognosis for kids with lissencephaly depends on the degree of the brain malformation, but many will die before age 10.
To combat the symptoms, Harlan has been paying for up to eight different medications any way possible. It has always been expensive, and not effective enough. Novalee’s tolerance to medication can last maybe two weeks before her body starts rejecting it. Which is “insanely” frustrating, Harlan said.
“You see them suffering, and there’s nothing you can do.”
Harlan had to find better medicine. After a bad episode last year, she focused on finding cannibidial, or CBD, a compound found in cannabis that does not get the user high and also has a range of medical benefits. She was on the wait list for it in Colorado, but then it became available in California.
Success! The effects on Novalee have been more positive than previous medications. Her seizures are down to around 30 a day. There is quicker recovery time afterward and she’s exhibited more energy.
But CBD does not come cheap. That’s why on Feb. 7, the week of Novalee’s fourth birthday, Harlan will hold a fundraiser at the Elks Lodge in Tujunga at 6 p.m. Businesses have already donated many items for the silent auction. There will also be a DJ and a photo booth.
Harlan grew up in La Crescenta. She played water polo for Coach Pete Loporchio at Crescenta Valley High in the late 1990s and has worked at Vons since 2003. She said the community’s response to the event has given her home a quintessential small-town feel.
“It’s gone out of control. Especially customers at work who have known me for so long, they all want to help because they didn’t know about [Novalee],” she said.
CBD is not without its skeptics, including Novalee’s current neurologist Dr. Meeryo Choe, who said the drug needs to be researched more to show whether it is efficacious. Obtaining CBD is difficult and Choe said it is not regulated in the same way as other medications.
“That’s generally how neurologists are. We don’t know a lot about the safety or the conditions. How much is the dose that is appropriate?” said Choe, who recognized it does have benefits for children like Novalee.
Harlan knows Choe is on the fence about CBD, but their relationship has been a positive one since they met in late 2011.
“I think Misty is phenomenal. I think she’s the best advocate for Novalee and the reason she’s doing well is because she’s being cared for by someone who will do anything possible,” Choe said.
The fundraiser was intended to be with a small circle of friends and family, but since a former CVHS schoolmate of Harlan’s, Mariam Barnes, started promoting the fundraiser on social media, it has exploded. Barnes posted a heart-warming status update, and word quickly spread.
“Everyone was on board to help her. It says a lot about our community,” said Barnes, a member of the Crescenta Valley Town Council. This month people have been dropping off various items for the event at Vons, a place where Harlan is well respected.
“Misty is a strong woman. That’s what I can say about her,” said fellow Vons supervisor David Magallanes. He said Harlan could easily be a store manager with her knowledge and how hard she works, not to mention how good she is with customers.
“She treats them like they’re family … She never lets a customer walk out of here unsatisfied,” he said.
Maybe because Harlan herself is never satisfied in regards to her daughter. Barnes and Magallanes both said they can’t imagine what Harlan goes through and how she never burdens anyone with her story. Harlan said it’s not a reality they want to face and besides her job is to check out groceries, not have people feel sorry for her.
“She always has a smile on her face. She doesn’t carry it around,” Barnes said.
Novalee is terminal, but Harlan said she has no expectation or thought of when she might pass. Through joining groups online with parents who have children with lissencephaly, Harlan said she learned there are cases of people who have lived past 30.
That day is too far off to think about right now. If Novalee makes it through the night, then the both of them will embrace the challenge of tomorrow, and the next week, and the next month, and so on.
“You put your mind on something, you just do it. If you don’t reach it, you set a new goal and keep going. There’s no quit here,” Harlan said, turning to face her daughter. “We don’t quit.”
Cost to attend the fundraiser on Feb. 7 is $15 presale, $20 at the door. To make a contribution to Novalee, contact Misty Harlan at SupplyNovi@gmail.com.