A rare disease patient is getting the recognition she deserves for her fearless outlook on death and her refusal to submit to affliction.
On Sunday, the winners were announced for this year’s Top Ten Warriors of Regeneration and the 36-year-old woman was among them. The Regeneration Society put together the competition that aims at raising awareness for rare disease patients who have shown fortitude and fearlessness amid challenges. By recognizing this fearlessness, the organization hopes to inspire the general public to be more positive.
The female awaredee, who asked to be anonymous, suffers from Spinal Muscular Atrophy (SMA), which affects 1 in 10,000 people. This genetic disorder causes muscle weakness and degeneration and in some cases leads to premature death. To learn more, click here.
The woman is well aware of the death possibility and says that she no longer fears it, because she makes the best out of every minute she has alive.
“Although I live in the dark, I can still see some light that comes from people who suffer like I do – my teachers, classmates and social workers,” the woman said in an interview with EJ Insight.
Even with her declining condition, she’s been fortunate enough to gets accepted into the Department of Psychology of the Chinese University of Hong Kong. She even completed a master’s degree program in social work at the Hong Kong Polytechnic University. Her next mission is to finish a doctorate and conduct research on sexual rights of the disabled along with tackling euthanasia.
Talk about amazing accomplishments from somebody who has been told they might not have much longer to live.
After seeing it work oversees, she introduced the idea of a Death Café in the United States. This support group meets at local cafés and bars to discuss life and death over food and drinks. In addition, she created a platform that hosts seminars while simultaneously promoting environment-friendly funerals.
She is not the only regeneration warrior. A man that is blind from both eyes hit a world record by becoming the first blind man to finish the Antarctica Marathon earlier this year. These warriors are among us and proving that there is no excuse to not be living life to the fullest.
To read more in EJ Insight, click here.
