A light that still shines bright
To tell the story of Danielle Byron Henry is to tell a story of family, love, pain, courage, and legacy. At 8 years old, Danielle’s migraine disease began with cyclical abdominal migraine, a diagnosis made four months after her pain began, thanks to the help of her father, a family practitioner. Progressing rapidly by age 11, she was diagnosed with severe chronic migraine disease. Six years after becoming chronic, on March 24, 1999, at age 17 Danielle took her own life; a life lost to unbearable pain from a serious neurological condition.
Danielle’s life is best told through stories shared by her parents, Dr. Dan Henry and Diane Henry, and her older sister, Elizabeth Henry Weyher. Each one speaks of the continuing role she plays in their lives, the difficult and misunderstood disease she lived with, and her spirit, which lives on through each of them.
Danielle Byron Henry
Danielle was a bright, energetic, and happy child. Fiercely independent and fun-loving, she would begin her day singing “Zip-a-dee-doo-dah” as she made breakfast for the family. She was full of life, loved being outside with her three dogs, and seemed to have an endless supply of tree frogs named Gus to play with. Her mother Diane states, “We had a true childhood with her but as her pain progressed, we all really missed out on her teenage years.”
As Danielle’s health deteriorated , her parents’ search for answers became a daily quest. They constantly tried the latest treatments—from elimination diets to flying to California to receive Botox injections. Danielle was one of the first children in Utah to try triptans. She was willing to try anything and did so under the care of multiple neurologists, a pain physician, a biofeedback specialist, an acupuncturist, and a psychologist, none of whom could stop the progression and pain of her disease.
That didn’t stop Danielle from fighting to live her life, as she began taking daily preventive and pain medications at 11 years old. Her freshman year of high school, Danielle, an exceptionally bright student, played basketball, tennis, and softball, and maintained excellent grades, all while experiencing daily migraine attacks.
At the end of her sophomore year, Danielle suffered a migrainous infarction, known as an ischemic stroke, which is an extremely rare occurrence in adolescents with migraine. The stroke weakened the muscles around her eye, called ptosis, and required surgery.
Danielle rebounded and continued playing sports and attending classes, but by her junior and senior years, she was missing significant amounts of school due to pain. This isolated her from friends and extended family, preventing her from living her life.
Elizabeth Henry Weyher, sister
“When she felt well, Danielle was magic. She was the sunshine in our family,” says older sister Elizabeth. “We were very close but she never told us how much pain she was in; she didn’t want us to know how bad it was. She would send me emails about her beloved Utah Jazz or what was going on at school. She was so strong but she never got a break from the pain—never—and it was incredibly difficult to watch her suffer.” Elizabeth speaks like a proud older sister when she mentions all of Danielle’s quirks or her dry, witty sense of humor that almost always came at Elizabeth’s expense. “I am incredibly sad that my husband and children did not have the opportunity to meet and love Danielle. She would have been a wonderful aunt, treating them to sleepovers and Utah Jazz games, watching ‘The Simpsons’, cheering them on in sports, and buying them frogs and lizards.”
After reflecting for a minute, Elizabeth states, “Danielle’s life has impacted me tremendously. She has made me a more compassionate and empathetic person, and as such, a better daughter, wife, mother, and friend. She has given me a greater purpose with her Foundation, inspiring me to help others with migraine disease.”
Dan and Diane Henry
When Dan and Diane speak of their daughter, they speak of the overwhelming gratitude for the time they had together, while struggling to discuss all the hardships Danielle faced. Diane recalls, “One day, Danielle said to me, ‘I wish I had a brain tumor because then people would believe me.’ There was such a stigma around her pain and a lack of understanding. The options were so limited 30 years ago that we pored over books looking for answers, for help for our daughter, for individuals to understand just how severe her neurological condition was, and to give her the hope that things would get better; a hope she desperately needed.” Diane echoes Elizabeth’s sentiments, as she characterizes Danielle as “the sunlight of our lives, when she felt well. Her teenage years were marred by the progression of the disease so it’s hard to characterize her later years. She fought bravely every day and even on the hardest of days, her independence made it difficult to see just how badly she was suffering emotionally; she was too tough to let us see that pain.” Diane closes by conveying the need for more education regarding headache diseases in medical school and the need for reduced stigma around pain, saying, “I never want another mother to feel there is no hope and no one who cares and understands what their child is living with.”
Danielle’s father, Dr. Dan Henry, also stepped up to play the role of her primary care physician, consulting with doctors around the country to try and find the best treatment options for his daughter. He was always looking for the latest information, trials, and treatment for Danielle. After Danielle’s death, Dr. Henry slowly changed his medical practice to focus completely on complicated headache and migraine disease; his research and personal experience provided him with the basis he needed to become a premier headache expert. Dr. Henry’s practice now focuses on the patient, providing them the help his daughter was never able to find. “When I help a patient to know I understand their pain and can make it personal because of my experience with my daughter, it means I’m doing Danielle’s work. I’m just a vessel but I see my daughter in so many of these young people whose lives are being so diminished by their pain. It breaks my heart but I’m here to do something about it. I never want another patient to hear, ‘I have nothing to offer you.’
Shine Her Light
Choosing to focus on her life, rather than her death, Danielle’s family hopes to end the stigma around headache disease and chronic pain. Elizabeth notes, “We want to focus on Danielle—the person she was and how her life has inspired us to start the Danielle Byron Henry Foundation in her honor and to “Shine Her Light” on migraine, which despite its prevalence and severity, is a widely misunderstood and highly stigmatized disease.”
Immediately, Diane echoes the same sentiment, “Danielle’s life was meant to bring us to this journey… to ‘Shine Her Light’,” which they chose as their slogan when, in 2016, the Henrys started the Danielle Byron Henry Migraine Foundation to honor her life and her legacy
The Foundation, with Dr. Henry at the helm and Diane and Elizabeth by his side, aims to provide support and access to care for those living with migraine disease. They are pushing toward better understanding of migraine disease in schools and the workplace, and for education of primary care providers to recognize and manage the disease with a vision of opening a comprehensive migraine treatment center in Utah. The Foundation has teamed up with the University of Utah Department of Neurology’s Outreach Program to start “Headache School.”
“Headache School’s” mission is to educate sufferers of migraine and headache disease in a collaborative and supportive environment with the vision of eliminating suffering through education. One patient noted, “Within the Danielle Byron Henry Foundation, there is hope for those who feel hopeless and misunderstood. There could be no greater mission for a foundation than that.”
Danielle Byron Henry Migraine Foundation: daniellefoundation.org
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