Monday, October 22, 2012

Mallorie is braver than you

Imagine for a moment that we had made such wonderful progress in the fight against cancer that only two hundred cases remained in the entire United States. Or substitute heart disease for cancer if you'd prefer. Or HIV.

That would be a revolutionary day, right? Something to celebrate, as by that point we would be just one more small breakthrough away from eradicating an entire disease, from wiping it off the face of the earth forever.

But what if, instead of cancer or heart disease or HIV, the disease affecting two hundred Americans was something you had never heard of? What if this disease was so rare, affecting such a small percentage of the population, that there was virtually no incentive to devote any funding to medical research?

And what if the disease was incurable, affecting mostly teenagers and young adults, and once diagnosed, meant a future of gradually worsening seizures, muscle spasms, dementia and eventually death?

What if you were diagnosed with Lafora Disease?

Welcome to Mallorie Lindo's life. Mallorie is braver than you. She's braver than me, too. Mallorie is a seventeen year old neighbor of mine in New Hampshire, living a few towns away, and she suffers from Lafora Disease.

Mallorie has been forced by circumstances beyond her control - beyond anyone's control - to carry a burden no teenager should ever have to carry. She knows what her future holds, and unlike many people diagnosed with a deadly disease, Mallorie can't even cling to the possibility of a miracle cure, because little is being done to find one.

Needless to say, Mallorie and her family are facing the battle of their lives. These kinds of fights aren't cheap, either, and many of the expenses Mallorie and her family are facing aren't the sorts of things health insurance will pay for.

It just so happens that at the same time I was learning of Mallorie's situation I was putting the finishing touches on my brand-new collection of mystery novelettes titled UNCLE BRICK AND THE FOUR NOVELETTES. The collection includes three previously published stories, including "Uncle Brick and Jimmy Kills," a finalist for a 2010 Derringer Award for excellence in short mystery fiction, as well as one brand-new story, written just for this collection.

UNCLE BRICK AND THE FOUR NOVELETTES is available at Amazon, Smashwords, Kobo, and any minute now at Barnes and Noble. I am pledging all of the royalties I earn from this collection - every penny - from now through Thanksgiving to Mallorie and her family. That amounts to about $2.06 per download.

I'd like to think the collection is a pretty good deal on it's own, $2.99 for 40,000 words of entertainment, but when you add in the fact you'll be helping contribute to a young woman facing a future none of us should ever have to face, in my opinion it becomes a no-brainer.

If you're not interested in Uncle Brick and would like to contribute to Mallorie's fight directly, you can do so via the Paypal button at her website, Mallorie's Joy.

Mallorie's Joy - that's not the name you would expect on the website of a young woman facing what she's facing, is it? But that's because Mallorie is not what you would expect. She's braver than you and I, remember? She is determined to face each day as brightly and optimistically as possible, and while no one should doubt the difficulty of doing so in her situation, it's one of the things that make Mallorie Lindo and her challenge so special.

So check out Mallorie's Joy, click around and get to know this extraordinary young lady. Consider helping Mallorie and her family financially if you're able, either by purchasing UNCLE BRICK AND THE FOUR NOVELETTES or by contributing directly.

If financial support is not possible, I'd be willing to bet she would appreciate a prayer if you pray, or a good thought if you're not religious. Maybe a card or a note.

But please keep Mallorie in your thoughts.

5 comments:

Dani said...

I'll share this on my social-media sphere. :)

Al Leverone said...

Thanks so much, Dani...

Jim Wilsky said...

Al,

I stopped by just to say hello this morning and what I got was this touching post about something we can't even comprehend. Despite everything, she has that wonderful smile. That's what nailed me.

So, 1 more Uncle Brick sold today. I'm also going to put this up on my blog with a link and try to sell some there. - JW

Joe DAgnese said...

Bought one. Thanks for bringing this to our attention!
--Hoe

DonnaGalanti said...

Al, this is a sad and tragic disease and I hope she outlasts the statistics and money is put toward finding a cure and soon for Mallorie's sake. Thanks for helping out a cause! I will be too.