Like most mitochondrial disease patients, change is constant for Hayley from the moment she opens her eyes in the morning. “I never know how I am going to feel,” Hayley says. “It’s a process. You learn how to do the things you need to do and time them out so that you can manage your energy throughout the day.” On some days, Hayley may have several doctor appointments. On other days, she can rest with her dog, Lily, by her side.
Hayley’s journey began at age 12. She suddenly lost her voice and was not able to speak for nearly a year. When her voice returned, Hayley suffered from chronic pain, among other symptoms. Today at 30, Hayley lives independently with mitochondrial disease. It’s not easy, and she relies on help, support and coordination from her parents and her friends.
When she is able, Hayley spends her down time serving as a UMDF Ambassador. Hayley is one of over 70 patients and caregivers who volunteer their time to provide support, education and resources to other patients and families. It’s a role that gives her the energy to escape her illness from time to time and be part of a support system that helps foster her own independence while helping others like her.
Hayley is quick to reach out to offer help and guidance to those beginning their journey and to those who are living with mitochondrial disease.
“UMDF has been a light in our life. They have supported my family in so many ways and have offered so much hope to me and to thousands of mito families.”