A Family of Great Givers by Cheryl Simoens

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The great givers in my life are my family. I was born with a rare kidney disease known within this community as nephropathic cystinosis. Although it has been a painful journey full of fear, uncertainty and loss. Today I am thriving and living the life I am meant to be living.  This was not possible without two heroes and ultimately my entire family. The two heroes I speak of are my brother and father, both graciously donated one of their kidneys to me. My brother and father at different periods in my life accepted the enormity of what donating an organ means in order to give me back my life.

When I was 11 years old, I found myself, for the first time, in renal failure. I experienced bullying as a result of being different from my peers, side effects from my medication and the effects of end stage renal failure which prevented me from attending school. My father, without a second thought, stepped up and donated one of his kidneys to me. This allowed me to propel through middle school, graduate from high school and live a healthy adult life including attending university, getting married and starting a weightlifting routine. Unfortunately, because there is no cure for this disease, my transplanted kidney began failing for the second time. At the age of 30, I found myself face-to-face with end stage renal failure once again. The effects of kidney failure the second time were far more profound. I gave up my career, moved multiple times to accommodate my health, lost a great deal of savings from my inability to work and realized I might never experience giving birth to my own child. At such a heavy point in my life, came a light at the end of the tunnel; the news that my brother was a perfect match for kidney donation. I received my second gift of life from him, a new kidney, ultimately helping turn my depression around and giving me a new zest for life.

When I say my whole family are my great givers, I wholeheartedly mean it. Not only was I given the gift of life twice, but also have parents who help me, both financially and emotionally, when I experience times of low, negative self talk and waves of deep uncontrollable emotions. My oldest sister was always my biggest cheerleader, she even flew to Winnipeg from Calgary during my transplant and provided support in any way she could. My other older sister was always more than willing to help when I required necessary purchases including warm winter boots. My close aunt and uncle also have provided guidance to me in the form of learning about resilience.  After loosing both of their sons to cystinosis in the 70’s, I learned deep in my heart that if they could overcome such a crisis, I too could overcome my crisis.

The great givers in my life provide(d) support to me when I was at my lowest moments. I was barely able to survive but knew I would get through the tough times because of the gifts my family gave me. I have learned from each of them in different ways and am the person I am today, in large part, because of their unwavering love and unimaginable strength. I no longer survive; I live with resilience and an energetic thirst for life.

For this year’s Giving Tuesday campaign, we are honoring Cheryl’s family and the “Great Givers” who’ve had an impact on our cystinosis community. If you’d like to learn more about Giving Tuesday, visit our event page.