My daughter Danielle was a happy child, a gifted student and athlete, friend to everyone and a bright shining light in our lives. Then she developed migraine disease. The symptoms of abdominal migraine began when she was 8 years old. At first her migraine attacks were episodic, and then gradually they became more frequent. By the time she was 11, her migraine attacks were chronic, causing her to frequently miss school and requiring several hospitalizations. We tried everything: consulting top headache specialists, biofeedback, acupuncture, IV therapy and Botox as her migraine attacks became more complex and frequent.
Despite the severity of her migraine disease, Danielle maintained a high GPA with the help of understanding teachers. She was also a varsity athlete, lettering for 4 years in tennis and 3 years in softball. During her senior year in softball, Danielle’s migraine attacks were so severe that she frequently missed practices and games. When she showed up, she often just sat on the sidelines. That year, the coach purchased warm up sweats for the varsity team, and Danielle was excluded. It was devastating for her. It meant that she was not a part of the team. I called the coach and explained the severity of her disease. I shared how much it would mean to her to be included. And I even told him I would pay for the sweats. Like so many children who live with migraine, she just wanted to be a normal kid like everyone else. He refused.
On March 24, 1999, we lost our beautiful daughter and sister, Danielle, to migraine disease. The team presented us with a pair of those sweats at her prayer service. I did not know it was possible for my heart to hurt even more.
Migraine at School
In 2016, our family established the Danielle Byron Henry Migraine Foundation to honor her life and help those living with migraine, especially children and young adults. In 2019, the Coalition of Headache and Migraine Patients formed the Stigma in Education Committee. I, along with my husband Dan Henry, M.D., daughter Elizabeth and DBHMF Board Member Melissa Piercey, joined the committee and participated in the development of Migraine at School, a collection of the best resources and information for students, parents and educators to ensure children with headache diseases are given the best opportunity to excel in school.
On May 5, 2021, the Utah PTA passed the Resolution “Health Services for Students with Migraine at School.” It resolved to:
- collaborate with the Utah State Board of Education to incorporate information about migraine and headache diseases into the required state core health class;
- educate its membership about pediatric migraine and headache, and provide educational resources and materials to parents, students, administrators, educators and nurses;
- support headache disease screenings for the student population and provide resources to parents to conduct screenings in the home; and
- forward the resolution to the National PTA for their consideration.
As Danielle’s mother, words cannot express how proud and grateful I am to have been a part of the Migraine at School program and its implementation in Utah, the first state in the nation. Danielle’s experience as a child with migraine is not unique. Migraine is a serious neurological disease affecting 10% of children ages 5-15 and up to 28% of adolescents. Migraine is genetic and can present differently in children than it does in adults.
The Best Tool for Students, Parents and Educators
Despite its prevalence, migraine is often an invisible disease. Many students with migraine experience stigma, similar to Danielle’s experience with her softball coach. Migraine at School is the best tool for students, parents and educators to educate their communities about migraine, create a supportive environment and provide students the resources to succeed.
As a parent, it is critical that you educate yourself about migraine disease so that you can navigate this road with your child. Migraine at School provides a comprehensive list of possible accommodations that may help your child succeed in school as well as extracurricular activities such as athletics, drama, dance, music, among others.
Migraine at School also provides educators with valuable information about the symptoms of migraine. These are usually (but not always) head pain accompanied by any of the following: sensitivity to light, smell and sound; nausea and/or stomach pain; temporary vision changes; ear discomfort or pressure; and brain fog, among other symptoms. In addition, Migraine at School offers valuable steps educators can take to help a student when he or she is in pain.
Migraine at School provides hope and resources for parents and students navigating the difficult road of migraine disease. Danielle’s life ended too soon, but her light continues to shine.