On the last day of school, when a 4th grader passed a hat around the classroom, no one blinked. Instead, each 4th grader reached into their pockets and gave what they had – mostly coins. Together, they proudly collected about $15, believing that small change could lead to something bigger.
Another 4th grader, Margaret helped her aunt in the garden – planting squash and zucchini. Margaret’s aunt gave her $20 for her work. Instead of spending the money on herself, she brought it into school to add to the collection.
These 4
th graders at Halifax Academy in the Roanoke Valley were determined to help their friend and classmate, who, just a few days into summer vacation, would board a plane for California to meet the Wizard of Narcolepsy.
A Fateful Nap:
This story began five months earlier, in February 2011, when Diantha, a high school teacher at Halifax Academy, brought her two daughters along to a weekend conference in Greensboro, NC. The girls, Haven, age 10 and Seanna, 7, looked forward to mini-golf and the indoor pool.
On Saturday, Feb. 5th, Haven told her mom she needed a nap. “This was unusual,” Diantha recalls, “she’s always energetic. I thought she might be coming down with something.”
Haven’s sleepiness only worsened. Back home, she slept on the way to school, during school and after school. Ranked high in her class, Haven’s sudden change was obvious. She also began waking from vivid hallucinations in the night. Around the same time, Haven’s knees started buckling under her.
Diantha brought Haven to her primary care doctor, who ran tests for everything under the sun. “We live in an old house so lead poisoning was a possible concern,” Diantha explains, “We were grasping at straws in the dark.”
Haven’s knee-buckling progressed rapidly and before long, she collapsed to the floor of her classroom. Shaken by the incident, Haven’s teacher, Lindy cried as she brought Haven to her mother in the high school.
That’s when things got eerie, as this small private school had recently lost a student. A young boy named Dylan had passed away after fighting a heroic battle with an incurable illness called
Fanconi anemia. During this difficult time, the community had come together to support Dylan and his family.
Dylan had been a grade younger than Haven in school. With his memory still fresh in everyone’s mind, worst-scenario thinking was only natural.
Next, Diantha and Haven traveled to a hospital in Greenville, NC for a MRI. While in the waiting room, Dylan’s mother, Betsy walked in. “She drove an hour and half to be with us,” Diantha describes, “her support was incredible!”
Yet, while waiting for the MRI results, the doctor instructed them not to leave the premises and mentioned the cancer ward across the street. An assistant pulled Diantha aside to tell her she’d already reserved a room for Haven in the cancer ward. “We were terrified.”
When Haven’s MRIs showed no cancerous abnormalities, there was a big sigh of relief, but still so many questions. Haven was falling out all the time by now.
From here, they traveled to various doctors at the best hospitals within driving distance - from Pitt to Duke. They checked for epilepsy and everything else imaginable, yet still no answers.
Finding Narcolepsy:
It was Haven’s 4th grade teacher, Lindy who first found narcolepsy with cataplexy and called Diantha. “I’d heard of narcolepsy,” Diantha recalls, “but didn’t know it was such a serious illness.” She read more online and quickly thought this may be it.
Soon thereafter, Haven helped her mom cook breakfast sausage one morning. Haven enjoys cooking and this was her first attempt at sausage. As she lifted the first cooked sausage from the pan, the link fell to the floor.
“I didn’t think much of the first fallen sausage,” Diantha explains, “but watching her drop link after link on the floor, I couldn’t take it anymore.”
Diantha drove Haven to Duke Emergency Room that morning. During this visit, she suggested narcolepsy with cataplexy.
The doctor responded, “How do you spell cataplexy?”
The interaction was unsettling, but the doctor was honest. “I don’t know much about narcolepsy, I’m going to research it tonight.”
From here, Diantha, following advice from her sister-in-law Mable, self-referred Haven to UNC Chapel Hill’s sleep center for a sleep study. A few weeks later, Haven was diagnosed with acute onset “narcolepsy with cataplexy” at age 10.
Once diagnosed, Haven began treatment with a sleep specialist at UNC Chapel Hill. However, in 3 visits, Diantha and Haven never met the doctor whose care Haven was technically under. Instead, they met only with the Physician’s Assistant. “If I am going to give my 10 year old daughter such serious medications, I’d like to meet the doctor,” Diantha rightfully reflects.
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| Dr. Mignot |
Diantha researched online and found that Stanford University was conducting narcolepsy research.
“I saw a number and called,” she describes, “Mali answered.”
Mali is the head coordinator of Stanford’s
Center for Narcolepsy. She supports Dr. Mignot and works tirelessly on behalf of people with narcolepsy.
Speaking with Mali, some of the missing puzzle pieces started coming together for Diantha. Both parties agreed it would be best for Haven to receive care with Dr. Mignot at Stanford.
Dr. Mignot is the
Wizard of Narcolepsy. Not only is he an internationally prominent narcolepsy specialist, but he is also a leader in our understanding of childhood acute onset cases like Haven’s (and the possible connections to H1N1 vaccine/virus).
Traveling to California would be very expensive and Diantha was unsure how she would afford this. Yet, she was not alone.
From Pancakes to Chicken Plates:
One Saturday morning, 15 high school students from Halifax Academy’s Beta Club rolled out of bed around 5am to meet at a local Applebee’s by 6:30am. They volunteered to work at the Flapjacks Breakfast Fundraiser for Haven, organized by Dylan’s mother Betsy and the biology teacher Carla.
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| Flapjacks Breakfast Fundraiser Kitchen |
The kitchen was sweltering hot. Some students flipped pancakes while others carried heavy trays of food to tables. It was hard work, a lot harder than the teenagers imagined but well worth their efforts. The breakfast raised over two thousand dollars for Haven.
On Field Day, students purchased $2 stickers for their cellphones, allowing them to use their phones and raising more funds for Haven. There was a car wash led by the computer teacher, Ashley and collections taken at various local churches. As previously mentioned, there was a hat passed around a classroom and Margaret’s gardening earnings.
Together, these funds allowed Haven to make the trip across the country to receive personalized attention and expert care from Dr. Mignot.
Now, Haven has returned from California and started a new treatment plan, hoping to improve her sleepiness and cataplexy. Challenges remain, but her community’s support endures as well.
Unbeknownst to Diantha, other faculty members donated their sick days to her, so that she would not lose her already meager income during this challenging time. In addition, the school awarded partial scholarships to reduce Haven and Seanna’s tuition for next year.
Going from doctor to doctor, Haven had missed a lot of school but worked extremely hard to keep up her good grades. Haven's little sister, Seanna received support from her teacher Sandra, who stayed after school to help Seanna with her work. Diantha’s mother and friend Lee provided invaluable care for Seanna as well.
Most recently, a local chicken plate dinner honored Haven. A young man named Matthew, a past student in Diantha’s Spanish class, organized the event. Matthew’s chicken plate dinner raised an impressive $1400 to further support Haven.
If you live in the Roanoke Valley, you already know this story, because it’s yours. Your efforts are invaluable and extend much farther than you imagined. Thank you to Haven, Seanna and Diantha for allowing me to share your experience with the world.
A few months ago, many people in Roanoke Valley had never heard of narcolepsy. Others had heard of it, but believed it meant you were just a little extra sleepy or lazy.
Now these same people have led by example that narcolepsy is neither a silly joke nor something to be ashamed of – but something we can honor in the light of day with love and compassion. They’ve proven that small change makes big change. Thank you.
Photos from the Flapjacks Breakfast Fundraiser:
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| Applebee's Booths Filled for Fundraiser |
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| Fundraiser Volunteers: Mary Beth, Victoria and Kimberly |
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| Aunt Mable and Haven |
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| Fundraiser Volunteers: Drew and Kristin |
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| Preparations in the Kitchen |
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| Diantha, Haven and Seanna |
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