Saturday, February 26, 2022

Charity Sunday: Rare Diseases #CharitySunday #SMA @CureSMA

Charity Sunday 2022 Banner

Welcome to the Charity Sunday blog hop!

I’d been wondering what cause to support this month. The world faces so many problems... honestly, it’s hard to know where we can do the most good.

Then I got an email from Cure SMA, informing me that Monday the 28th of February is Rare Disease Day:


We hear a lot about the diseases that afflict large numbers of people: heart disease, cancer, diabetes, multiple sclerosis and so on. And obviously it’s important to support research and treatment for these diseases. But there are other diseases of which very few people are aware – until someone you know turns out to be a sufferer.

Spinal Muscular Atrophy (SMA) is one of these rare diseases. I’d never heard about SMA until six years ago, when my cousin Danny was born with SMA, a genetic disorder that affects roughly 1 in 11,000 births. SMA robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants.

The majority of babies born with SMA die before they reach their first birthday. Danny was lucky enough to be in trial of the experimental drug Spinraza. He’s now six years old. Although he is still severely disabled, physically, he’s alive and active, going to school, supported by a loving family and an informed medical establishment.

CureSMA is an organization dedicated to fostering research on SMA, providing authoritative information for individuals and families dealing with SMA, and advocating for government policies that assist rather than disadvantage SMA sufferers.

Anyway, for today’s Charity Sunday, I will donate $2 to CureSMA for every comment I receive. And to give you something to comment on, here’s a quick excerpt from my MM paranormal erotic romance At the Margins of Madness, released during my paranormal January promotion. It’s back to its regular price of $4.99, but to be honest, I still think it’s a great read if you like intense paranormal tales and gay romance.


Nineteen year old Kyle has devastating visions of horrific disasters. Everyone assumes Kyle is schizophrenic, but Rob, the cop who picks him up off the street, knows better. Since his telepathic sister's brutal murder, Rob wants nothing to do with "gifted" individuals like Kyle. Yet he can't deny his attraction to the beautiful, tortured young man -- an attraction that appears to be mutual.

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Rob wandered into the kitchen and put on a pot of coffee, a headache pounding in his skull. He couldn’t pretend it was coincidence. He couldn’t lie to himself. It might seem incredible, but he knew that psychic powers were real. Real, dangerous and destructive.

Mary’s “gift? had appeared around puberty, just like Kyle’s. One day in high school study hall, she had started to hear people’s thoughts. She had run screaming from the classroom, her hands pressed to her ears, trying to shut out the cacophony babbling in her head. She had never gone back—their mother had tutored her at home, and then she had earned her degree in accounting on-line. As soon as she was old enough, she moved into an apartment by herself. She rarely went out, trying to shield herself from the mental voices that assaulted her whenever she did.

Rob used to visit her, though probably not as often as he should have. He hated to think of her so alone. She was his kid sister, after all. She was nine years younger. She should have been married, or at least had a boyfriend. She told him that being around one or two people wasn’t too bad, especially if she knew and cared about them. The last time he’d been to her place, she had been excited. She’d found someone, someone who was helping her learn to control her power. To turn down the voices when she needed to, and to focus on one stream of thought out of many. For the first time, she had some hope of living a normal life.

Two weeks later, she had disappeared. Three weeks later, they found her body in Elm Park, with her throat slashed and her chest torn open. Her heart had been cut out.

The grisly murder had dominated the headlines at first, but as time went on and no clues were discovered, the public moved on to the next sensation. Rob didn’t forget, though. He couldn’t erase the image of her mutilated body lying on the bank near the lake. He had been on duty, one of the first members of the force on the scene. Two years later, he still saw her in his nightmares.

If only he’d spent more time with her. If only he had seen the danger. If only she had been an ordinary woman, without power. Rob was certain that her special abilities were related to her death.

Rob’s eyes blurred with tears. His fists clenched. He’d find the murderer, someday, somehow. He had spent weeks, combing through the thin stash of evidence, poring over the coroner’s report, looking for some hint that would point him toward the killer. He had kept Mary’s personal things, after they cleaned out her apartment, but hadn’t found any clues in the few boxes that represented the sum of her young life.

His mother couldn’t bear to talk about her lost daughter. Not long after the murder, she began showing signs of Alzheimer’s and was now in a nursing home. His dad, a cop like him, had been killed in a drug bust in 1995. Now he was the only person who really remembered Mary—her life, her struggles and her terrible death.

Rob?” Kyle stood in the doorway of the kitchen, naked and beautiful. “Is everything okay? I heard the phone.”

A lump of stone settled in Rob’s chest. His head felt like it was about to split open. He must not allow himself to get closer to Kyle, regardless of how needy the boy was, or how seductive. He couldn’t handle another brush with the kind of power Kyle exhibited. He had used all his tears grieving for Mary.

It was the department. They want me to come in early today.” It wasn’t exactly a lie. “Want coffee?” Rob gestured at the percolator.

Love some.”

Rob turned to get mugs from the cabinet. Kyle came up from behind, circling Rob’s torso with his arms and rubbing his erection in the crack between Rob’s buttocks. Sparks sizzled over Rob’s skin. Kyle nuzzled Rob’s shoulder while massaging the cop’s nipples. Rob’s cock began to rise, despite his determination to keep Kyle at a distance.

Cut it out, Kyle.” Rob’s voice sounded forced even to his own ears. “I’ve got to get into the shower and then to work.”

I was hoping I might convince you to come back to bed.” Kyle dropped both hands to Rob’s groin, gripping the cop’s swelling dick in one hand while cupping his balls in the other.

Sorry, I can’t.” Rob pulled out of Kyle’s grasp, a bit more roughly than he intended. Kyle looked surprised and hurt. Rob busied himself pouring coffee, handing Kyle a full mug. “I’m kind of sorry I gave in to you last night. It really wasn’t the right thing to do.”

Kyle seated himself on a stool near the breakfast bar. Rob tried to ignore the arc of the boy’s cock, pointing towards the ceiling. “It felt right to me,” Kyle said softly, his eyes dark and intense under those hypnotic brows. “I thought you felt the same.”

You’re vulnerable right now. You’ve been through some terrible experiences. You need to focus your energy on recovery.”

Recovery. Right,” Kyle repeated, irony thick as syrup in his voice. “So why can’t fucking you be part of my recovery?”

I’m old enough to be your father, Kyle. And I’m a cop. I can’t allow myself to get mixed up with a psychotic street kid who thinks he can see the future.” Rob winced at his own words. But he had to drive a wedge between himself and Kyle, for his own good, and for Kyle’s too.

I thought you wanted to help me.” Kyle actually looked close to tears.

I do. I will. But do you really think that sucking my cock is the kind of help you need?”

Couldn’t hurt,” Kyle replied, with the ghost of a grin.

I don’t agree. I’ve got to maintain some authority here. You’re going to need discipline to get through this. That’s how I can help you. I can help you to be strong. To fight against your visions. But not if I’m jumping into the bed with you at every opportunity.”

Don’t you want me?” Kyle’s face darkened. Rob could see how many times the kid had been kicked, beaten, rejected. He ached to put his arms around the young outcast, to clutch the sleek body to his own and swear to protect Kyle from the world. But Rob had to protect himself first. He took a sip of his coffee, trying to find the right words.

Look, Kyle. You’re the sexiest guy I’ve met in ages. But you’re sick. You need to concentrate on getting better.”

Kyle’s brow furrowed. “I’m not sick. My visions, terrible as they are, are true. They’re not some symptom that will go away with the right drugs or therapy.” His face brightened. “What about the train, the tracks? The place the vision revealed to me?”

Rob stared at the bottom of his empty mug. The leaden weight in his chest made it hard to breathe. “Nothing. Dawson Street is nowhere near the Holden railroad line.”

The light drained from Kyle’s eyes. He slumped on the stool, hanging his head. His face was a white mask. “Another death,” he muttered, as if to himself.

Nonsense.” Rob placed an avuncular hand on Kyle’s shoulder, resolutely ignoring the electric charge that casual touch sent to his groin. “You mustn’t believe in your hallucinations. No one died.” That, at least, was true, Rob thought, hating himself for his deceit but knowing that he had no choice.

Kyle said nothing. He didn’t move. The young man’s stillness was frightening.

I’ve got to get going, Kyle, but I’ll be back by three this afternoon. Then we can start working on some of your real world issues. Getting you an ID, first thing, then taking you down to the division of employment to see if they’ve got any relevant jobs. Or maybe enrolling you in some skills training. How does that sound?”

There was no answer.

And there’s someone I’d like you to talk to. Dr. Hardy. She’s a psychiatrist. She helped me after—when I was going through some tough times myself.” Rob couldn’t bring himself to even mention Mary’s death in Kyle’s company. “She’s sharp as a tack, and a very warm person too. I think you’ll like her. How does that sound?”

Kyle stared at the linoleum floor tiles. Rob willed the young man to look up, to meet Rob’s eyes. It worked, in a way, though what he saw in those eyes scared the hell out of him.

Sure, Rob. Whatever you say.” Kyle stood up slowly, as though it hurt to move. “I think I’ll go back to bed.”

Please don’t forget to leave a comment. Every one is a bit of hope for someone like Danny.


Ornery Owl of Naughty Netherworld Press and Readers Roost said...

Before my own health took a long walk off a short pier, I worked as a home health nurse. One of my patients was a pre-teen boy with a rare genetic disorder. Most kids die from this disease before reaching 5 years old. I don't know if he's still alive but he was such an anomaly that he was being studied by a major university.
I've tweeted your post.

Dee S Knight and Anne Krist said...

Danny is like a miracle child! (In more than one way, I'm sure.) Thanks for sharing about him and about SMA.

I loved A Margin of Madness!

Iris B said...

As someone with a rare disease, I appreciate your Sunday charity blog posts & donations. Story sounds good, too ;-)

Debby said...

He sounds amazing. These kids have such a strength. My daughter is an amputee and seeing the kids at the Shriners broke my heart, but they are so resilient.

Nightingale said...

A very worthy cause. You're very generous to support these various charities. Sizzling excerpt.

Colleen C. said...

Another wonderful cause!

Larry Archer said...

Thank you for your continuing efforts to support charities that help the less fortunate.

Tina Donahue said...

Another worthy cause. A second cousin of mine was diagnosed with a rare disease. She was a beautiful young woman taken from us by it. Medicine shouldn't be about profit but helping people. Hopefully, someday cures will be found.

H.B. said...

My cousin also had a similar rare disease. She made it pass her 10th birthday which was longer than doctors thought she had but sadly passed soon after. Thank you for bringing to light this charity.

Lucy Felthouse said...

A great cause to support, as always!

Pia Manning said...

These families face their challenges with heart and determination. Such a worthy cause!

Fiona McGier said...

What a great choice! Just because there are only a few with a disease, doesn't mean it isn't important to seek treatments--and maybe even a cure! Keeping your cousin Danny and his family in my thoughts.

Anonymous said...

Thank you so much for this informative post!


Lisabet Sarai said...

Thanks to everyone who visited and commented - and thanks for sharing your own stories. I've just made a $30 donation to CureSMA.

The next Charity Sunday will be March 27th. I hope you'll join us once again.

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