Bonus scene of Rarity

Bonus Scene of Rarity
©D.A. Roach 2015
This scene takes place at the end of Rarity.
“Hey babe, thanks for helping me organize this.  I think Soren is gonna’ be surprised.” 
            I scanned the pool deck and saw Soren’s soccer friends along with a dozen more friends of Jay and Soren.  We rented the community pool from 8pm to10pm and worked feverishly to string the lights and decorations.  Meg was on Soren duty, keeping him busy until 8:30 when we’d be ready for him.
            “I hope so.  Meg sometimes gets excited and lets the cat out of the bag.”
            “Think she’ll do that?” Jay looked at me with worry.
            “No idea.  If it happens though, it will be by accident.” I knew Meg was becoming more attracted to Soren and really wanted this night to be a success.  I also knew that she didn’t need me or Jay interfering with their budding relationship.
            “He told me he put a note in her mailbox last Friday.” Jay said as he hooked up the stereo.
            “I heard, Meg said it was cute.  Did he tell you about it?”
            “Are you kidding?  We’re guys, we don’t talk about that stuff.  What did it say?” Jay was curious for sure but wouldn’t dare ask Soren.
             “It said, ‘You’re the girl I look forward to see…would you consider going out with me?’  And it had a check box for yes or no.”
            “Cheeseball.”
            I punched Jay in the arm and felt bad instantly when I realized he’d probably have a bruise in a minute or two. “God, sorry.  Listen, I think it’s sweet.  Besides, girls love that stuff.”  He rubbed his arm.  “I wasn’t thinking, I shouldn’t have punched you.”
            “You’re so violent!”  Jay teased.  “I’m fine, but maybe lay off the Wheaties next time.”
            My phone chimed, it was Meg.
-We’re on our way.  He has no clue!  See you in 10!
            “Ten minutes everyone!”  People scampered out of the pool to head toward the entrance. I glanced back at our pool party setup and smiled.  It looked like the perfect party, lightup beachballs floated in the pool, lights were strung between the umbrellas, and the sun was fading into a perfect purple and pink dusk.  Jay grabbed my hand and we hurried toward the crowd.
            Soren’s voice grew louder as they approached, “Meg, why are we here?  The pool closed half an hour ago.”
            “I know, I left a bag here yesterday and arranged to pick it up with the manager.  It should be just around this corner.”  Meg was holding Soren’s hand, leading him into the pool party area.
            “Surprise!” Soren’s mouth fell open and then a giant smile spread across his face.  Jay walked through the friends and grabbed Soren in a tight embrace.
            “Happy birthday Bro!”  Soren then mingled and greeted everyone.  Jay lingered around Soren while I went to the stereo to start up the music.
            “So, you got it all done!  Great work and great turn out!”  Meg was behind me grabbing a cold drink.
            “We did, but I think I might need to refresh my deodorant!”  I joked.  Meg chuckled at my comment.  “So, he had no clue?”
            “None.  Though he seemed suspicious when we pulled up here.”
            “How was the mini-golf?”  Meg told him that she was taking him mini-golfing for his present and he was more than eager to go. She gave me a sly smile.
“Awesome.  We made a bet. If he won, I had to give him Mr. Pickles (her stuffed animal bat that hung from her keychain).  If I won, he had to buy me a stuffed animal from the arcade area.”  I couldn’t help but laugh.  Meg’s obsession with stuffed animals was…intense.  And here she was roping him into her Land of the Lovies.  I looked down and saw Mr. Pickles dangling from her purse clip.
            “So you won.”
            “Yep.  Siegfried the porpoise is in the car.”  I bust out laughing and Meg winked at me.  Meg and I unwrapped the fried chicken and side dishes and called everyone to eat.  After dinner we sang Happy Birthday and served the cake.  Time was passing too quickly as we all were having so much fun with our friends.
After the cake, Meg stood and straightened her skirt. “Excuse me, I need to give Soren his other present.”  I had no idea what Meg had bought Soren, she wasn’t even carrying a gift.  She walked up to him and whispered something in his ear.  He excused himself from his conversation and grabbed Meg’s hand.  They walked away from everyone toward an area hidden by bushes.
            “What’s going on there?”  Jay sat in the chair next to me and put my hand in his.
            “She’s giving him his present, though I don’t know what it is.” 
Jay stared out across the pool at all the partygoers. “Great party babe.  Everyone is having so much fun.  Wish we had this place for 2 more hours.”  I nodded in agreement. 
Meg and Soren were only out of sight for three minutes.  They came around the corner, Soren leading Meg by the hand. Both were grinning from ear to ear. I was desperate to find out what Meg got him for a present but he clearly wanted her by his side as he said his farewells.  Jay and I started throwing away the trash and packing up the drinks and food as partygoers were heading home. 
“You guys are the best.  Thanks for an awesome night.” Soren looked so happy.
“You bet man, glad you liked it.”  Jay answered.
“Meg, what did you give Soren?” 
She winked at me, then looked to Soren and smiled.  He pulled out a note with his handwriting on it and held it up.  The box next to the word YES was checked. 
“Oh my god, you guys are a couple now?!” 
Meg nodded happily.  Jay and Soren high fived.
“It’s about time.”  Jay remarked.  We loaded the car with the party items and headed back to Jay and Soren’s house.  Soren unlocked the front door as Meg and I carried in the leftover food. 
“Did you all have a good time?”  Soren’s dad boomed from the living room couch.
“Hey Pops, best party ever.  We brought you some leftovers.”
“Oh good, I was just thinking of getting a snack.”  Soren’s dad approached the kitchen.  He was taller and rounder than Soren.  He greeted us as he headed for a foil pan with chicken in it.
“Are you eating again?  I swear we just left the table.” Soren’s mom swatted a dish rag at her husband.  He leaned over to kiss her before he took a bite of the chicken.  “Brogen!  How are you sweetie? How was the party?” She came over to hug me.
“It was great.  I think we really surprised him.”  Meg and Soren brought in the cooler and Jay brought in the light strands.
“They did, it was the best Mom.  Pops, how’s that chicken?”  Soren’s dad made some inaudible remark of acknowledgement as he chomped his chicken.  Jay snickered at his uncle. 
“Mom, I know you met Meg before, but tonight we became more than friends.”
“Hi Meg, so you are a couple now?”  Soren wrapped his arm around Meg pulling her closer to provide a visual answer to his mom.  “Well, congratulations.”  She smiled at Meg and as she walked past Soren she muttered, “We will have a chat later.”  Soren’s mom gave him a pointed look. Everyone but Meg knew what the look meant.  When Jay told his aunt that we were a couple, she had the sex talk with him.  Soren was in for an earful tonight.  He probably knew it all and could teach his mom a thing or two about sex ed but he loved his mom and would listen, just as Jay had.
“We’re gonna’ walk the girls home, be back soon.”  Jay told his aunt as he kissed her cheek.
“Be safe and come straight home.”
Soren wrapped his arm around Meg and headed toward her home.  He turned to yell, “Brogen, thanks again.”  I waved in return.
Jay held my hand as we walked.  “Are you alright?”  Jay knew that crowds were intense for me.  Too much energy trying to leech onto me.  But I enjoyed the party.  I did not feel overwhelmed by the energies since I was busy working the food and stereo.  Also, everyone’s focus was on Soren and the mood of the evening was light and fun.  Yet, I was glad it was over.
“Yep, better now.  The party was fun but I’m ready to relax.”
“Yeah, parties are fun but a lot of work.  I felt like I hardly saw you tonight.”
“Me too.”  He stopped and pulled me into a kiss. 
His lips were soft and slow.  He gazed into my eyes and smiled, “Hi beautiful.  Will you go out with me tomorrow?  Maybe have a picnic?”
“No, sorry, I have plans with my other boyfriend.” I couldn’t resist.  He was being adorable and I had to rib him.
“Ugh!  That’s it you can walk yourself home.”  He feigned annoyance and took 3 steps away from me.
I caught his arm. “Kidding, kidding, kidding.  Come here.”  I pulled him close and returned the kiss. “Pick me up at noon.  Don’t be late or I might really go with my other boyfriend.” I teased.
“I love you Brogen Mathers.”
“I love you too Jay Wilken.”

R is for…Rarity

R is for…Rarity.

First cover – my drawing & pic of Soren

Rarity is my first published novel with Limitless Publishing. It was originally self-published but was accepted by Limitless and received new edits and an awesome cover. My son was diagnosed with a rare and life threatening genetic disorder. But now that we know he has this condition, we can make good choices to keep him safe, have him monitored, and take meds to prevent some of the complications.

Is he cured? No.

But there is hope on the horizon with amazing treatments like CRISPR (genetic editing). So what about those that aren’t diagnosed? Great question. There are so many patients with the same condition as my son that have not been properly diagnosed. So even if a cure exists, if they aren’t diagnosed…it does them no good.

2nd Cover

So my goal was to use my talents (writing) to educate others about Vascular Ehlers Danlos Syndrome.  Rarity is a book about a teen diagnosed with this disorder and the emotional rollercoaster that all involved endure. I wrote it based on my own emotions from my son being diagnosed. It’s a young adult book, the characters in it are in High School, a time when kids are very much thinking about themselves and how things will impact them. At the back of the book, there is information about the disorder and signs and symptoms to consider. My hope is that someone reading it may have a lightbulb go off and a proper diagnosis can be made on someone not previously diagnosed.

I thought I’d show some of the covers for it as it evolved for your viewing pleasure.

Final cover – published with Limitless Publishing

★•✩•★ SYNOPSIS ★•✩•★
Brogen Mathers can’t deal with teen drama…
As an empath, she is constantly bombarded with other people’s energies. Despite coping techniques taught by her psychologist mother, it’s often too much to bear, forcing her to avoid most activities a typical high school junior would enjoy.
Jay Wilken won’t let his past define him…
A dead mother and an alcoholic father brought Jay to Stanton, but he doesn’t want pity. His good looks, charisma, and friendly nature quickly win over the whole student body, but he has his eye on one girl…Brogen.
Brogen can’t believe anyone could be so genuinely nice. It has to be an act, right? But when Jay literally saves her from deadly jaws, she has to admit he’s exactly what he appears, and he’s worth risking the potential emotional upheaval.
“Drama” might as well be Becca Grant’s middle name…
Another newcomer to Stanton, Becca’s blonde beauty and abundant attitude shoots her straight to the top of the popularity charts—and she believes Jay belongs right there beside her. Accustomed to getting exactly what she wants, she launches a relentless mean-girl campaign to shake up Brogen and claim Jay for her own.
Everything changes with a devastating diagnosis…
When Jay learns he has a rare and potentially fatal disorder, he keeps it secret and begins to push Brogen away to spare her future pain—which is exactly the sort of opening Becca is waiting for.
As Jay’s well-meaning deception unravels,
Brogen realizes there is much more than her heart at stake…
But how far is she willing to go to fight for someone she loves?
★•✩•★ Grab your copy! ★•✩•★

G is for…Genetic Mutations


G is for…Genetic Mutations.
In pharmacy school, very little was taught to us students about genetic mutations. My only conversations about mutations were when I talked about the X-men movies. But 3 years ago, my 4 year old was diagnosed with a rare and life threatening disorder, Vascular Ehlers Danlos Syndrome. It’s a mutation of the COL3A1 gene, or in simpler terms, a collagen disorder. VEDS  is like having your body be made with faulty glue. While most people have 100% strong glue, VEDS patients have just 15% strong glue…in EVERY cell of their body. Skin tears easily, organs tear or rupture easily, blood vessels develop aneurysms or may dissect, and the cherry on this sucky diagnosis…surgery is dangerous and reserved only in life saving measures. For some reason, when a VEDS patient is hurt, injured, sick – the body goes into this “inflammatory state” where white blood cells head to the injury to try and repair it, but this inflammatory state makes the glue turn to water and VEDS patients fall apart in their surgeon’s hands, many do not survive.
Image result for x-men

VEDS is “rare” but is it really? It is so frequently misdiagnosed or undiagnosed throughout the world that it is estimated that only 5% of people with EDS (the common and less deadly form) have actually successfully been diagnosed. The other 95% do not know they have it. The VEDS population represent a small amount of that number but VEDS can easily be ruled out with a blood test if doctors suspect it. The numbers are shocking and appalling.

Common VEDS signs and symptoms:
-flat feet
-bendy finger joints
-low muscle tone
-veiny chest
-bruises easily or skin tears easily
-family history of early death or aneursyms
-sleeps with eyes open

Unfortunately VEDS patients often experience their first vascular event in the twenties and the average life expectancy is 48 years old. However, many have died in their teens and young twenties and several have lived into their 50’s and 60’s.

We take our son to see the top doc in this field at Johns Hopkins Hospital every other year. We have him on the medicine they hope will prevent some of the issues and every fall we give a talk at the local med school to educate them on the disorder.

I also wrote a YA romance called Rarity to raise awareness about the disorder. One of the characters gets diagnosed with it and it complicates their relationships. Here’s the link to buy Rarity if anyone is interested in giving it a read. http://amzn.com/B00YTETSGK

Where do we go from here?
Onward and upward toward a cure. No, you did not mishear me…a cure. There is a new procedure that has been developed to splice out the gene mutation and recode it with the corrected gene information. This procedure is known as CRISPR. It works on EVERY cell in the body. Scientists all over the world have begun human testing with fantastic results (cured leukemia in a child, muscular dystrophy, genetic blindness to name a few). So my challenge now, is to shine a light on VEDS so that researchers become interested in testing it on this rare disorder.

For more info on CRISPR: http://vector.childrenshospital.org/2014/09/genome-editing-a-crispr-way-to-correct-disease/

For more info on VEDS: http://www.ehlersdanlosnetwork.org/vascular.html

My son is now 7, soon to be 8. I’d love for him to have a chance to live a “normal” life, to not worry that playing football with the kids at recess might kill him. To not worry about lifting something heavy (may cause aortic dissection). Here’s to hoping we can get this cured before it’s too late.