‘When I was five years old, I was raped by my next door neighbor. As you can imagine, it took its toll on my whole childhood. I was in and out with therapists and I was told over and over again that growing up would be hard…that I would struggle with depression, anxiety, and PTSD. Doctors told me I was paranoid and overreacting but I wasn’t scared of everything for nothing. I just ended up not discussing it with anyone and I dealt with it on my own. But that put me in uncomfortable positions. I tried to never feel anything. Some meds the doctors put me on shut me down completely so that I couldn’t actually feel anything.
As a kid, you shouldn’t have to think or worry about things like that. All through elementary school, I felt like an outcast and that no one else had to deal with something like this. I felt like no one wanted to be around me. A lot of people knew what happened. My teachers knew. They could see I was struggling with socializing. Third to fifth grade was a blur…I lived with my grandparents because my mom was a recovering drug addict and an alcoholic and my dad wasn’t around too much.
My faith is in learning how to heal myself. Lately though, I’ve stepped out of my shell. I’ve been going to concerts and I’ve met some of the most amazing people. Music has gotten me through this and it has helped me to express my emotions. It’s been ten years now since the attack. Two years ago, I thought I wouldn’t be alive and that there was no point in anything. But, one of my best friends introduced me to poetry and photography and, when I found out, from her, that I wasn’t alone, I realized that my feelings were and are valid. I’m learning to trust people again and I learn something from every person I meet. There is still a light inside my soul that no one can put out. I want the world to know that even though terrible things can happen, the world is still beautiful and I’m glad to be a part of it.’
‘On January 7, 2012, I woke up with a migraine. I took some medicine, went back to bed and I woke up with that same migraine and I’ve had it ever since then, I’ve had a daily, consistent headache that has never gone away. A day in my life living with migraine disease usually involves waking up with a bad headache and then deciding if it’s worth getting out of bed. Sometimes it is, sometimes it isn’t. Over the course of the past five years or so, I’ve been able to somehow live well in spite of my challenges. But the only way I learned that living life with a migraine all the time was possible was when I thought it wasn’t. I got really, really depressed and thought life wasn’t worth living. I ended up at the University of Utah emergency room where I found a new doctor.
A physician’s assistant asked us if we had ever heard of Dr. Henry and we hadn’t. So we made an appointment the next day. We got in rather quickly and, since then, he’s made a major difference in my life. I was at the bottom of the bottom when I met Dr. Henry. I was severely depressed, incredibly anxious, and even suicidal because of the constant migraine. I had no hope and no desire to live. He gave me a reason to live…his compassion, his understanding, and his caring are the marks of a good doctor.
Since meeting Dr. Henry, I’ve had a reason to get out of bed every day because I know that one day, we’ll find something that will help me…that one day, I won’t be in pain, that one day, I won’t have to swallow a bunch of pills every morning and every night and, that one day, I’ll be able to have a family. I’ll be able to devote my entire time to them and my headache won’t get in the way of that. I didn’t think that was possible, but I now know it is. I am so grateful for Dr. Henry and his family and especially for his daughter, Danielle, and for the sacrifices that she made so that I can live, so that I can have a family, and so that I can have hope. I know that life is worth living and that I can live with my pain. It took getting to that point for me to turn around and decide that I can live with it. I can do what I want to do in this life and my life is worth fighting for.’
‘My grandfather passed away two weeks ago. I was out of town at the time but we knew it was coming. He was eighty-two years old and he’d been diagnosed with cancer in January. He decided to fight it with chemotherapy and a lot of us didn’t know that that was the right decision. That’s because the chemotherapy wiped him out. He went from being a health, strong man, even with the cancer and turned into a shadow of himself. He lost his hair and his muscle mass and his brain was on chemicals so he couldn’t think clearly anymore.
At one point, his doctors told him he had about two weeks to live and, four weeks later, he passed. When that happened, I wasn’t surprised and yet I was surprised that I wasn’t sad. I wondered if that was the right way to feel because I’d never had anyone close to me pass away. You’d think, being part of the human experience, it wouldn’t be that big a deal but it was. I just felt like I should have been mourning but I wasn’t, even though I had a great relationship with my grandfather.
The hardest part was watching my mom go through it. My grandfather was her father and I was really proud of how she was handling it. She had a lot of outer emotional strength but I could tell that, on the inside, she was struggling with all of it. At the viewing, my mom stood by the casket and looked at her dad and I could see the sorrow in her eyes. I walked up to her and gave her a hug on the side and she asked me, ‘how do you deal with death? Are you doing OK?’ And I told her the truth…I wasn’t OK. It wasn’t easy because of what I was watching her go through. That was harder than the actual mourning.
She then told me, ‘I love you, honey,’ and she gave me this long, loving embrace. I hadn’t had a really tight hug like that in a very long time. That’s when I realized that I do have a lot of love in my soul…for my mother, for my grandfather, and for my family. The death of my grandfather helped me to knock down the emotional wall and to realize that it was OK to feel what I was feeling. I’ll always miss my grandpa but I think that experience with my mom was what made everything fall into place.’
‘Danielle was my sister. She was three years younger than me and we were very close growing up. We played a lot of sports and she was very talented athletically and academically. When she was eight, she started getting migraines and, as she got older, the disease progressed to the point where she couldn’t function or go to school or play sports. She just couldn’t live her life and experience her childhood normally.
I watched my parents do everything they could do to help Danielle. They developed a new normal and a new way to survive. They squared their shoulders, got to work, and did the best they could. Sometimes, there’d be a phone call and they’d need to go pick Danielle up because she had a bad migraine and couldn’t drive or something like that. They had to spend extra time with her, which was understandable. I was a child at the time and, in retrospect, I wish I had done more for her, too.
Immediately after Danielle’s death, we established a charitable foundation with the primary goal of benefiting children and animals through which we supported many charitable causes. However, as my father’s practice focused on migraine disease, we realized that we needed to do more in our community to support those living with migraine disease. We established the Danielle Byron Henry Migraine Foundation in 2016 to support treatment and healing of people living with migraine disease. The real power of the foundation is in the knowledge that my father, Dr. Henry, obtained after taking care of Danielle for so many years. He started seeing more and more headache patients and today, he has really focused on that branch of medicine.
People get tears in their eyes when they speak of my father, and so do I. He has helped so many people and he has changed their lives. He has given their lives back to them by helping them to become functional again. That’s a rarity in that he is so personally invested in his patients. He works night and day and spends time on the weekends researching issues for a particularly complicated patients. He does everything he can to take care of people and, in the eyes of his patients, which I have seen before, there’s a sweet gratitude for the difference he has made and continues to make and that’s what makes all this worthwhile.’
‘My name is Dr. Dan Henry and I started the Danielle Byron Henry Migraine Foundation in honor of my daughter, Danielle. When she was very young…about five years old, she started having migraines. She got very sick and they kept getting worse and it really exploded when she was about eleven. She ended up in the hospital for about a week. Over the next few years, we saw pretty much every neurologist and headache specialist in the region. We traveled to different doctors and no one really had any answers as she got older. At seventeen, Danielle was a gifted athlete. She lettered in two sports during her freshman year and then she had a stroke and ended her own life to end her suffering during her senior year.
I was a general family practitioner and my practice had been full but, after Danielle passed away, I started transferring a lot of my patients to my other partners so I could devote more of my time to headache patients. I started spending hours and hours of my own time researching migraine disease even though I wasn’t planning on becoming a headache expert but the head of the New England Headache Institute and I had visited and he told me I had become a headache expert.
Over the years, I’ve worked exclusively with headache patients. I’ve come to realize that, at some point, not far down the road, someone is going to need to take my place so we started this foundation. We are raising awareness about the sixth leading cause of disability in the country with it affecting thirty-eight million Americans. Fourteen million Americans have chronic migraine and headache pain every day but the research done on it is miniscule compared to other conditions. The National Institute of Health gave over $24 million to headache research, over $200 million to asthma research, and over $1.1 billion to diabetes research and yet, there are more headache patients in the country than there are diabetics and asthmatics combined.
Migraine disease is a severe neurological condition that involves everything from photophobia to phonophobia, nausea, vomiting, dizziness, vertigo and the list goes on and on. It’s a disease of a highly sensitive brain. So, I decided we need to raise awareness and to get people’s attention. We’re starting on a community level and we hope to see it spread from there. 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 was cross-eyed when I was born so my parents took me to Primary Children’s Hospital and I had surgery to correct my eyes. They didn’t know I had keratoconus. I was bullied through all of grade school. Every time I took my glasses off, people would make fun of me and wonder where I was looking or why my eyes were going in different directions. When I got into high school, it was even worse because I didn’t want to wear my glasses and I thought I looked better without them. I wanted my makeup to look on point. In high school, I started to understand what was going on with my eyes.
I was told that keratoconus wasn’t a big deal. It wasn’t progressing very fast. By my senior year, my vision was slowly going away but even then, I didn’t pay attention and didn’t care. I got my first job at a call center and my doctors wanted me to wear contacts. Soon, I got lazy and didn’t want to put them in and take them off. When I finally did, my eyes were red and burning. They gave me antibiotics and they told me that contacts maybe weren’t a good idea after all. So, I got new glasses and never went back to contacts.
Last year, I was told that I am going to go blind by the age of twenty-eight or thirty. My corneas are now shaped like cones rather than circular. The doctors suggested a cornea transplant…so in July of last year, I got my first cornea transplant and didn’t know that I wasn’t going to get my good vision back right way. In December, I started to see better but just recently, my vision has started to fail again. I can’t see at night anymore. I can’t see the lines of the road when you’re driving. It’s so disappointing because now, I worry about needing to drive somewhere if I’m by myself. This condition is going to be with me forever. All the doctors can do is slow it down. I don’t drive at night anymore. I am now legally blind out of my left eye and the vision in my right is getting worse but very slowly.
I know I am going to be blind and I worry about missing the moments of my son’s life. But, I believe in God. I believe He gave me this challenge because He knows I can overcome it and keep going forward with my life. Even if I might not be able to see in the future, I can pay attention to and capture the magic of moments right now. I took my vision for granted and now that I’m losing it, I’m sorry because I should have cherished it and taken better care of it when I was younger. I touch my son’s hair and I hold his hands and I tell him, even though he’s just a baby, that I’ll always be there for him and that I’ll never forget him. I’ll always be his mom whether I can see him or not.’
‘When I was pregnant with my girls, my biggest dream was and is that they are loved and their autism has never changed that. Our family requires more work than most but we also have so much more joy with them. I get to wake up with morning snuggles and smiles. I get to live in their world and in their special and simple moments. There is nothing fake about my girls. They don’t smile because it’s expected. They smile because they feel it. When they laugh, they are experiencing pure joy and it’s real.
We take life at their pace and we’re not worried about grades or reading levels. We have the freedom to celebrate every victory even if it’s as simple as putting one’s shoes on at almost nine years old. It’s nice to not have to live the prescribed life that society dictates. We just live the best we can and we do it on their terms. It’s been the hardest thing I’ve ever had to do but it has also been the best.
Naturally, there are worries and fears. My children will never live on their own and I don’t know what’s going to happen to them when we get old. They will never be able to take care of themselves and it weighs on us and we often ask ourselves…what will happen to them and who will care for them when we’re gone? Who can love them as much as we do?’