Roanoke Valley Awakens to Narcolepsy

by julie on August 4, 2011

 
Mother Diantha with daughters Haven and Seanna

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 4thgraders 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.
 
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.
 
 
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:
Applebee’s Booths Filled for Fundraiser
 
 
Fundraiser Volunteers: Mary Beth, Victoria and Kimberly
 
Aunt Mable and Haven
Fundraiser Volunteers: Drew and Kristin
Preparations in the Kitchen
Diantha, Haven and Seanna
(Photographs curtosy of Victoria, thank you for sharing!)

For more information about narcolepsy, please visit Stanford’s Center for Narcolespy website.

For more on Haven’s story, click here.

{ 18 comments… read them below or add one }

Narcolepsy News on Twitter August 4, 2011 at 11:40 am

Thank you for sharing this story.

Let's hope it inspires other people to keep asking and never settle for more unanswered questions and fague diagnosis

Let's salute the members of this community in the kindness they showed!

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Anonymous August 4, 2011 at 2:43 pm

You know, Julie, I do come from a great Christian community! Halifax Academy and the surrounding area is filled with loving and self-sacrificing people. I will NEVER be able to thank them enough for their understanding and generosity! All of you who supported us in even the tiniest way should feel a sense of pride, as you have LITERALLY helped to improve a child's quality of life. This illness is incurable, but treatable with the proper care. That is exactly what was made possible by the good people of the Roanoke Valley.
As for Mali, Dr. Minot, and the staff at the Stanford Center for Narcolepsy, Y'all were a God send for me, my family and all who hold Haven dear.
Julie, thanks so much for all you do and have done to help others understand. What a kind spirit you are!
I love you each and every one!
And, above all, thanks to the Lord! I trust the He has a plan in all of this and I do believe I have already witnessed some of the fruits of it. Thank You for allowing me the ability to trust and not be bitter.
Eternally Grateful,
Diantha

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Miss Diagnosis August 4, 2011 at 4:13 pm

Wow! What an inspiring story, Julie! That so many people came together even to help find the diagnosis and then to raise money so treatment would be possible, is amazing.

Diantha, I had childhood narcolepsy but it was not diagnosed until 2008 when I was 31, so you are truly blessed to find some answers. And blessed by a strong community. I will pray Haven continues to improve and that all financial needs for her care will be met. Take care!

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Christine Sama August 4, 2011 at 4:52 pm

What an incredible story about a courageous family and the power of love. These are the things I wish we read about in the newspaper. Thank you Julie for sharing so beautifully (as always).

Love,
Christine

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Saraiah August 4, 2011 at 5:07 pm

Diantha, if you'd ever like to bring your lovely girls up to Washington D.C. for the weekend to meet a bunch of grown-ups with narcolepsy, we'd love to host you all! Next to Mali's and Dr. Mignot's care, there's nothing like meeting other people who intuitively understand one's life. The Narcolepsy & Hypersomnia Support Group of the Greater Washington D.C. Area meets once a month, and I know Julie's got all the details.

p.s. Gorgeous article, as usual, Julie!!

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Anonymous August 4, 2011 at 9:09 pm

Thanks for the article, Julie. It is wonderful that Haven was diagnosed relatively quickly, has such tremendous community support, and has been able to travel to Stanford to meet Dr. Mignot and receive treatment. As we have discussed, I am always dismayed by the inability of so many physicians to diagnose narcolepsy and cataplexy. Keep spreading the word!!
Mark Patterson

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Anonymous August 4, 2011 at 9:35 pm

Diantha, thank you for letting Julie share your story. Your story brings back memories of our family getting my son diagnosed with narcolepsy, also at age 10. I am glad you pushed the physicians and researched online until your daughter received the correct diagnosis – we had to do the same. MG, Co-Founder, Wake Up Narcolepsy

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Anonymous August 5, 2011 at 12:50 am

Hi Julie: Excellent writing. You make such heart-wrenching and complicated matters accessible for populations that might not otherwise fully be able to grasp the gravity of the subject matter. As ever, your talent for making the complex into the consumable is outstanding. Best, Nick

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Scott August 5, 2011 at 1:51 am

Wow. First off, I can't agree more with the previous commenter about your writing Julie – you bring serious, often painful issues to focus in a way that both conveys real hardship and pain but that at the same time reveals people's strength and resilience against adversity. When I read stories like this, I am moved to tears, but am also encouraged.

Thank you to the people of Roanoke Valley! And thank you to Diantha and Haven for being willing to share their story. It is really inspiring to hear about a community rallying around and supporting one of it's members with Narcolepsy. To everyone who helped this family in need, I salute you.

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Marcia Coy August 5, 2011 at 9:09 am

Everytime this blog post is read, and everytime this beautiful girls story is told, someone somewhere will have a light go on, in a world where most of us traveled through the dark. Thank you so much Diantha and Haven for sharing this part of your lives with us. Your story of love hope and community is an inspiration to everyone.

Julie, Beautifully written, Thank you!

~ Marcia Coy

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Paula Barlowe August 5, 2011 at 9:16 am

You've done a great job on this Julie/Diantha, and with the help and support of the community for your daughter, y'all have came a long way fast.~ I've lived, and at times thought I was gonna die with this disease that I have suffered with for the past 14yrs. As you and others in this area have learned how complex this disorder can be.~ I'm thankful that y'all have that support too.~As you must know 14yrs ago when the symptoms first hit me strong, there was nobody on this side of the country that had a clue about what I was going through. I went to doctor after doctor, and the only thing they could come up with was I was over stressed. Well at that point, over stressed was an under statement, I knew stress could do a lot of different things to a person and their body, but could not imagine how it could make me drop everything I tried to hold, and fall to the floor with the worst feeling I've ever felt on the inside of me imaginable. With doctor after doctor, and drug after drug, I couldn't see the light at the end of the tunnel.~ Finally a show came on Dateline, and just by chance a niece of mine saw that show that night, called me up to tell me she had saw a show of people with the same symptoms I was going through. My next visit to psychologist I had ended up, I asked him had he ever heard of this. He told me he had, but knew nothing about it, so the journey had just began. He sent me to Duke where eventually I was in a study for the new drug for this, Xyrem. From this point on there is a book I could just about write about different things a person with narcolepsy/ cataplexy has to go through. Some funny, and some not so funny, but scary especially for the ones in the presence on me when a cataplexy attack occurred.~~ It saddens me to see anyone have to go through this, and especially a child. If there is anything that I can help y'all with, please don't hesitate to call or come by and I'll do what I can to help in any kind of way~~

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Tricia Higgins August 5, 2011 at 10:17 am

Tears are streaming down my face, endless salty tears. It is not because I cannot relate to this post, but it is because I can relate so profoundly. I feel like I already know you Haven. It has stirred up a flood of emotions in me. I was very much the same child as you are with similar experiences. My symptoms began as a child, I was called clumsy. I am older now and it has been the last 11 years of my life that I received a diagnosis of narcolepsy with cataplexy. So I applaud you and your story and my hope is that many people read this post. What a brave story you share. I hope to meet you in the future.

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Anonymous August 5, 2011 at 2:07 pm

Thank you Julie for telling this story.

Thank you Diantha for letting it be told.

I am a student at Halifax Academy and Diantha has been my teacher for the past two years. She has always been one of my favorite teachers, she is fun, caring, and has a great personality. I dont know why things happen to great people but I know God has his own reason. I've learnt everything does happen for a reason and all we can do sometimes is pray and hope for the best. I love you Diantha, Haven and Seanna. Yall are in my family's prayers! See you at school.
Love,
Megan

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Anonymous August 5, 2011 at 7:22 pm

Julie, as you know, I have had narcolepsy with cataplexy since I was a child (although I was not diagnosed until I was in my 20s) and I'm so sad to hear that the medical community is still so terribly ill-informed about narcolepsy. Why don't doctors test for sleep disorders while they're busy testing for every other possible medical condition?

That said, this story truly demonstrates the power of a loving, persistant family and a strong, supportive community. Having narcolepsy and cataplexy as a child certainly comes with its challenges, and if it would help Haven and her family to know someone who also had narcolepsy and cataplexy as a child, I'd be happy to connect with them.

- Victoria

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sbeaulieu August 7, 2011 at 11:05 am

Great Story, glad to see that their are people out there more than willing to help out and more than willing to understand.
Thanks for posting this Julie, and thank you Diantha for sharing your story.
I was diagnosed at age 14, and had it not been for my mom's determination to get me a proper diagnosis i would have been declared "an average tired teenager". I am happy to see your family got a lot of support to help a young kid and to get the proper diagnosis/treatment!
Good luck with it all!! =)

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Madcap MissAdventurer August 12, 2011 at 2:10 pm

I’m sitting here at work reading narco blogs during lunch as is my usual way of passing the hour…. Have been following your blog for about 2 months now and am slowly making my way through your archives. Today I thought I’d check out what was going on with you in the current day and leave the archives for another time….

Well I’m sitting here crying in my office, with mascara runnin’ down my face and absolutely not caring how it may look to those passing by my glass fronted office…..This post of yours gives me hope for generations to come that may end up having this disease. Maybe, just maybe, through the talented writing of people like you and some publicized efforts at awareness these future generations might have a smoother road to travel than you and I did.

You see, I have narcolepsy and my 17 year old son was diagnosed with it in May of 2010. Teachers, ex-husband, friends, and family looked at me like I’d lost my mind when I told them that the social, educational, and medical issues he was experiencing were from Narcolepsy. The doctor’s joined in by telling me that Narcolepsy wasn’t hereditary and that we needed to explore other options (translating that I couldn’t get the doctor to order a sleep study so I was looking at ways to pay for it out of pocket).

I saved up enough money and took my son to be tested and what do you know? His mother knew what she was talking about. My son was diagnosed with Narcolepsy without Cataplexy (thank goodness for small miracles).

After diagnosis, my son and I spent several hours with his teachers and guidance counsellor teaching them what Narcolepsy was and what signs to look for in their students. My heart went out to these underpaid and overworked people that already have so many responsibilities. Here we were adding yet another item for them to be on the alert for. Narcolepsy now joined the list that boasts life altering problems such as ADD, ADHD, Dyslexia, Anorexia, Depression, Child Abuse, Drug Abuse, etc, etc.

My son and I forgave the teachers, doctors, friends, and family for thinking I’d lost my mind and for thinking that he was lazy. We realized that the true culprit in all of the drama was the lack of information. The entire event showed us that education truly is key and the more people that are educated on Narcolepsy the more awareness and diagnosis there will be, this in turn will help to fund more research, and hopefully lead to a cure.

Thank you for being public about your trials and tribulations along with your successes. Adding stories like this to your blog adds yet another dimension to your already amazing ability to communicate this complicated and misunderstood disease.

Thank you for all you do.

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REM Runner August 13, 2011 at 9:34 am

Thank you all so much for your comments. It means the world to me that you enjoyed and related to my writing and Haven's story.

I will do everything I can to raise awareness. Please pass the article's link to others to spread the word.

Sending wakefulness from DC, Julie a.k.a. "The REM Runner"

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Anonymous February 2, 2012 at 5:42 pm

Hi I just saw this post, I guess because we were out of town when it was posted. Just wanted to let you know there is a pediatrician, Dr. Mark Patterson in Roanoke, VA who has a daughter with narcolepsy with cataplexy. He knows the difficulty of getting a correct diagnosis. Hope all goes well for your daughter.

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