Amy Mathers | Hope For Families

My name is Amy Mathers and I am 28 years old. I was born with a genetic condition called Glycogen Storage Disease Type IIIa (GSD). Missing an enzyme that releases glycogen for the body’s use after it is stored, my liver, heart and muscles were affected, and at the age of four my liver failed. Thankfully, a liver transplant on Valentine’s Day in 1988 gave me a new chance at life, and after that I was able to complete elementary school and high school.

Two years after I finished high school, I was diagnosed with heart failure and told a future heart transplant at an undetermined time would be necessary to save my life again. I was in the Bachelor of Social Work program at York University at the time, but after my third year I withdrew from the program when my symptoms worsened.

I was placed on the wait list for a heart transplant in the summer of 2009 with the prognosis of having less than a year to live. Four months later I got the call that a heart was available and I received it on November 17th, 2009.

Unfortunately, along with my new, healthy heart came the Cytomeglavirus (CMV), a virus that inhabits most of the population but is only problematic to people with suppressed immune
systems. My body contracted the disease and as a result I have spent sixteen weeks in hospital and an additional ten weeks visiting the hospital for CMV treatments in the time since my heart transplant.

My liver and heart have now been replaced, so the GSD has been reduced to affecting my muscles. GSD is considered to be a muscular dystrophy, which means my muscle weakness is progressive, so sometimes I use a walker or a wheelchair to get around as needed.

Outside of my medical obligations, as a young person I felt it was important to pay forward the gift of life I had received by doing advocacy work for organ and tissue transplant awareness. My efforts included speeches, lectures, presentations to school groups, and writing about my experience as an organ transplant recipient and the medical impact of my procedure, in addition to my work as a volunteer during National Organ Tissue Donor Awareness Week.

I am currently the Resource Coordinator at Hope for Families, a counselling centre dedicated to supporting families dealing with illness. I co-authored and co-taught a course at Conestoga College entitled “Assisting Families Dealing with Chronic Illness,” even when I was hospitalized for CMV treatment and had to lecture over Skype.

I am a member of the Ontario Library Association (OLA) and worked in a library during my school years as well as after I graduated. As an OLA member, I am in my second year of
volunteering for the Forest of Reading White Pine Selection Committee. My love for young adult novels has influence my work in the form of bibliotherapy, where I use books to help
people identify their feelings and cope with their lives.

To make sense of my experiences and share with others, I write a blog called “The Phoenix Zine” (www.phoenixzine.org). I also co-authored an organizer for people dealing with chronic
illness called “The Phoenix Pages,” which focuses on helping people manage their illness and still live their lives.

It is my belief that people dealing with chronic illness and/or disability can still have full, productive lives. Educating our youth about the differences people have, their opportunity to contribute to society, and the importance of organ donation are issues I am very passionate about. I have prepared talks for high school audiences, but I am also available to talk with individual classes about my experiences with organ donation, genetic illness and my love of the world of young adult books.

I have spoken for Heartlinks, a support group for heart transplant patients based out of Toronto General Hospital, The MS Society, and Rogers Daytime television show in Mississauga.