Re-reading my sister, Bethany’s Will, I sighed, “My dear sister, you shall be the death of me.”
It’s been a month since Bethany’s timely demise. She was born with a rare genetic disorder of which her body is missing the ability to absorb calcium. Doctors had given her a life sentence of 33 years when she was finally diagnosed at 18. Last month was her 33rd birthday when she drifted off in her sleep.
Now, with her cremated remains in a box along with my poems and essays, I am off to find a tall mountain to fulfill my sister’s final wish.
(100 Words)
This is a semi-true story.
The genetic disorder is true. I have it myself, it’s called “Albrights Hereditary Dystrophy” and yes, I was given a 33 years life sentence. Fortunately, I have a medication that acts like a training wheel for my body to absorb calcium. So hopefully, my life sentence on earth is extended. The not true thing about this story is I don’t have a sister and obviously, I’m not writing this in my ash-form but hopefully someone else will be willing to scatter my ashes off of a tall mountain???
Good luck with it all. It’s such a really good believable story~
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Thanks, I guess?
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I’v heard of Albright’s, but was not aware that there is now a helpful medication. Best wishes to you on this difficult journey.
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There isn’t a medication. The one I’m taking now is just treating the symptom, not exactly a cure, just sorta like a temporary fix. Not exactly helpful either since I have to take it everyday for the rest of my life.
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I see. Again, prayers for you. I’m so sorry you have to deal with it.
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Best Wishes.
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Thank you for sharing this huge part of your life. I wish you the best and hope something is found during your lifetime!
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Thank you.
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A good blend of fact and fiction. I’m glad there is a medication that fills in to extend your life.
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Thank you.
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You’re welcome.
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So touching. And I’m pretty up on so many disorders, but I’d never heard of this one. I wonder why not. My best wishes for a long, full life.
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This isn’t a common disorder. When I was finally diagnosed, the doctor told me in his 30 years of practice, he’s only seen 10 cases. Right now, I really just hope the medication really extends my life. I guess I’ll know in 3 years.
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I’m glad you have the right medication and all is well. A touching story of a loving sister!
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Thank you.
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I would offer to scatter your ashes from a mountaintop but it is my sincere hope that it never comes to that. A bittersweet story well told.
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Thank you. 🙂
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Thanks for sharing your story. I’m so sorry that you have to deal with this genetic disorder. I admire your spirit and courage, though. I wish you all the best and that your life far exceeds 33 years.
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Thank you. Crossing my fingers. 🤞
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🙂
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Here’s to medicine. Here’s to science. Here’s to life.
And love.
And last wishes.
Well done!
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Thank you.
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