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Friedreich’s Ataxia Columnist Write About Rare Disease Day
Here is another column focused on “Rare Disease Day” which is on February 28th. The column is “A Rare Disease Day Reflection: We aren’t Just Inspirational Tiny Tims” written by Matthew Lafleur
It bothers my son at times when people refer to him as an inspiration, strong, “special”. Living with a rare disease is hard and being brave and putting on a happy face is not easy and shouldn’t be expected.
My favorite quotes taken from this column are:
“I had to learn the hard way that people with disabilities are much more than inspiring fortune cookies for everyone else. We are not jolly, wise mentors all of the time.”
“We are the heroes of our own stories. Some days we can take on the world, some days we inspire everyone around us, and some days we curse at ourselves and wonder whether we can go on.”
This us know your thoughts after reading it.
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1 Reply
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Thanks for sharing this, @colleensteele. I had many favorites in this column. Matt had me feeling all the feels. I bet Cullen enjoyed reading this. Being “special” is not what we want; we want to be “normal,”(inclusive) whatever that may be, lol.
Like Cullen., I am not a huge fan of that, but I am guilty of saying that to others. Warrior, PHighter, and Hero are some of the ones I tend to use.
The second quote that you shared was the one I told Matt stood out to me the most. Very well written.
I hope that y’all read this and let us know what resonates with you.
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