Rare Disease Day and SIX Giveaways!

Like me, you might never have heard of Rare Disease Day. The following three authors have intimate acquaintance with rare diseases. Giveaway details below.

Linda Phillips 

Linda Phillips Skyping with a class in International School of Nanshan Shenzhen, P.R. China (Hong Kong)

Linda is no stranger to my blog. Here is her story:

My involvement with rare disease began during my teaching career when I met two students at two different schools with Batten disease.  While I never taught either of them directly, the schools were small enough for faculty to know many students outside their classroom. I watched with concern as 8-year-old Brandon Hawkins' cognitive and motor skills began to decline instead of thrive as they typically might at a school designed to address learning differences. Concern heightened when his vision began to fail and after extensive testing, his parents shared the diagnosis none of us had heard before: Batten, a rare neurodegenerative disease that has no cure and is often fatal by the early twenties. Not far away at another specialized school, Taylor King, the same age as Brandon, was diagnosed by the same doctor with a form of the same disease.  Brandon moved out of the area, but the crowning blow came when we learned that his younger brother, Jeremy, received the same diagnosis, a phenomenon that's not uncommon when both parents are carrying the defective gene.  

My first book, Crazy, is an autobiographical account of my coming to terms with a mother with bipolar disorder. Watching the unfolding tragedies of the Hawkins brothers and Taylor evoked emotional issues similar to those I had experienced growing up with mental illness in my family. I wanted to explore how a gifted and highly motivated teen would deal with her brothers' physical debilitation and probable early death.  In both Crazy and Behind These Hands, the teen protagonist has no control over the devastation happening before her eyes.  She must find a way to accept a new reality and to react with compassion and love.  I didn't realize how closely related the two books are until I began making presentations through Skype in the Classroom.  My topic is "Compassion:  The Key to Understanding Mental and Physical Disabilities." I'm finding it extremely fulfilling to advocate for compassion towards those with mental illness and rare physical disabilities with teenage classrooms all around the world. 

You can find Linda online at: Skype in the Classroom:  https://education.skype.com/u/1216c5b4-63a7-4f75-6e57-08d777fe2482

Web:  www.lindavigenphillips.com

Twitter:  https://twitter.com/LVigenPhillips

Instagram:  https://www.instagram.com/lindavigenphillips/

Laura King Edwards

Laura and Taylor

I featured Laura and her book on my blog also. Here is more of her story:

Each year on the last day of February, Rare Disease Day raises awareness of rare diseases and their impact on 400 million people worldwide. It's a day to celebrate not only progress toward treatments and improved quality of life, but also what's special about each of those patients and the people who love them. People battle rare diseases year-round (and not just on a single day set aside to recognize them).  

I lost my little sister to a rare disease called Batten disease in 2018, so Rare Disease Day hits especially close to home. Since the devastating and shocking diagnosis in 2006, I've worked hard to save first her life and, later, the lives of other children like her. Taylor had a special kind of courage. She inspired everyone who knew her (and many strangers) in her too-short 20 years on Earth. Watching her overcome incredible obstacles to learn braille, run 5Ks and more pushed me to be the best version of myself, and it pushed me to fight for change. In 2013, I ran a half marathon blindfolded to bring attention to the cause. The race achieved that goal but also saved my life at a time when I wasn't sure I had the will to keep going. 

Run to the Light is the story behind the race, but more than that, it's about how to find hope and meaning in the face of life's biggest challenges. It's Taylor's story, but it's also a universal tale of courage and faith. My sister showed others how to dig deep and persevere, no matter what they were facing. On Rare Disease Day and every day, I hope Run to the Light does the same.  For more information please go to Taylors Tale. 

You can connect with Laura on Twitter.com/lkedwards11, instagram.com/laurakingedwards, or Facebook.com/laurakingedwards.

Kathleen Burkinshaw

You may have already met Kathleen on my blog. Here is her story:

Nineteen years ago, instead of enjoying a candlelit dinner with my husband to celebrate Valentine’s day we sat in a dimly lit room by the low lights of an ultrasound in the ER. The ultrasound revealed that I had a deep vein thrombosis (DVT). What started out as a routine three- day hospital stay to treat the blood clot turned into over a month in the hospital from complications that nearly killed me. My souvenir from my stay- a diagnosis of ReflexSympathetic Dystrophy (RSD) (also known as Complex Regional Pain Syndrome (CRPS)) as a result of nerve damage from the blood clots. Definitely would’ve preferred one of those ‘All I got was just the lousy t-shirt souvenir’ instead! 😊

RSD is a chronic, progressive pain syndrome caused by damage/malfunction of the peripheral/ sympathetic nervous system as well as the immune system. (Which is why doctors have said that my mother's exposure to radiation from the atomic bomb on August 6th has played a role in my RSD). Over the years RSD pain crept in taking over my legs and hands. Although, it has taken a lot from me, I’m not ready to give up everything. It did give me time with my mom when she opened up and shared the horrific memories and awful loss she dealt with on August 6th. And I learned that even though I couldn't be the active mom to my 4-year-old daughter(at the time) as I had been or continue in my past career as an executive in the health care field; I found my own ways to be a dedicated/involved mom and realized my brain could still work/be creative through writing. I'm so grateful for the support and love from my family, friends, doctors, and now readers of The Last Cherry Blossom. Their past and continued encouragement, along with my faith keeps me from giving up emotionally or physically.

Connect with Kathleen on Twitter @klburkinshaw1,  Instagram @kathleenburkinshaw,  Facebook @authorkathleenburkinshaw, and her  website www.kathleenburkinshaw.com. 

GIVEAWAYS

Each author is giving away TWO copies of her book. To enter this super-giveaway, please comment with your email address including your email address if you are new to my blog. Books will be drawn randomly and will be personally autographed to the winners by the author. Enter soon! Giveaway ends on February 29.  

Run to the Light: A Review and Giveaway

Congratulations to Deborah Allmand for winning THE PLAYER KING from last week's blog post.

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My blog readers know that I generally read and review books for children and teens. Every once in awhile I come across a book for adults that I want to share with you. Run to the Light (Bedazzled Ink, 2018) by Laura King Edwards is one of those. 

But first a disclaimer: Laura Kings Edwards' book about her sister Taylor's battle against Batten Disease is not an easy book to read. Batten, a rare inherited neurological condition that causes vision loss, progressive cognitive and motor decline, and seizures, usually strikes children between the ages of 5-10 and is always fatal. Laura does not hold back on describing her fear, anger, depression, and anguish during the twelve years that Taylor bravely fought the Batten monster. But she also eloquently shares the joy she experienced in the moments she shared with her brave little sister. 

If you've been reading my blog long enough, you will recognize this story. Laura gave me the privilege of hosting her cover reveal on my blog last March. Now, you'll hear about the story. Read it, and be inspired.

Read the story behind this cover here.

THE REVIEW

In 2006 Taylor was not quite eight when her family realized that her vision and school problems signified something far worse than any of them imagined--they were Taylor's first symptoms of Batten Disease. In evocative detail, Laura shows the reader the disease's progression, how it impacted Taylor and her family, Laura's journey to find acceptance, and most of all--how Taylor became a symbol of courage to her Charlotte, NC community and to the Batten world at large. 

Throughout the progression of the disease Taylor never asked, "Why me?" "Even as her body started failing her, she sought a normal life and never asked for extra help or attention." (p. 26) Taylor's resilience amazed Laura more than anything else.

Although there were the common stages of denial and numbness that we all experience when we receive shocking news, the King family--particularly Laura and her mother Sharon, turned their anger towards fighting the disease. Several months after the diagnosis, Sharon invited a small group of women to come for lunch. Laura listened as Sharon "declared war on Batten disease and urged the rest of us to join her on the battlefield."

"The doctors said there's nothing we can do," she said. "But I'm not going down without a fight." Her voice cracked as she described our opponent, ticking off the symptoms that had crept into my sister's life and the awful ones yet to come. But her resolved never wavered. "Nothing about this will be easy. There's little being done for Batten disease. There aren't many kids like Taylor. But we have to start somewhere. Someone has to take a stand." 
.......
In that moment, Taylor's Tale was born. (p. 29)

Taylor's family enjoying
The Magic Kingdom post- diagnosis. 2006

Sharon's decision to fight Batten led to taking Taylor cross-country to participate in a clinical trail to receive purified neural stem cells at Oregon Health and Science University in Portland. It led to raising thousands of dollars for research, attending umpteen Batten disease conferences, and learning the foreign language of medicine and science. It even led to a new North Carolina law that established the first rare disease advisory council in the country.

At the same time, Laura joined the battle by educating others by blogging, attending conferences, meeting leading scientists in the field, and working hard to raise money for research. Laura's personal journey intermingles with her running career which became a metaphor for her own fight. She was afraid to give up, thinking that Batten would win. "All my life I'd been running; I wasn't about to lose this race." (p. 54)

Two years later Taylor inspired Laura by running a 5K-- the only blind person in the race. Taylor ran tethered to her running buddy by a bungee cord.

Whereas I'd often felt only anger toward Batten disease, my sister had beaten her demons by ignoring them--by focusing not on what she'd lost, but on what she could still do. She didn't waste her time worrying about what Batten disease had taken from her. She paid it no mind, and she ran her race. 

Before the trees bloomed in the spring, I'd started running for her. ( 101)

Although Laura began running for something greater than herself, the specter of not crafting the perfect blog post or not answering an email to Taylor's Tale on time haunted her. Would she hurt her sister's chance of survival? As she moved from being a sprinter into a long-distance runner, Laura realized,

I'd come to understand the value of a long-term plan. I'd learned how to push my body past the limits of what I'd previously believed it could achieve. 

And yet, my sister's body was failing her. (p. 129)

Taylor and her dad on a family trip to
the U.S. Virgin Islands, 2010.

It took me a long time to learn that Batten disease is more like a marathon [than a sprint]. You start off strong, with lots of energy. You have runner's highs and lows. Some days you think you could run forever. But then some days you feel like when you cross the finish line, you'll be so glad to see it--so exhausted--you'll just be happy it's over. Some families, families whose kids have died, have told me in the end that it's like that. It's so bad, so freaking ugly, they can't face it anymore. It isn't even about making happy memories at that point. it's about their kid's dignity and their own survival, and about finding peace. (p.209)

Taylor's Fletcher School classmates raised $3500 for Taylor's Tale in 2013.
Taylor is third from the right.

The last race that Laura describes in the book is the one she ran blind--just like Taylor did. She trained for five months and used the same bungee cord that Taylor had used several years prior. She was cheered on by other runners, the media, and her family.

I'd run 13.1 miles in the dark But I didn't take a single step alone. As I ran the final stretch of Thunder Road, led by the voice of a friend and the courage of a dying girl, I understood: Batten disease may have cast a dark shadow on our world, but I wasn't running away any longer. 

I was running to the light. 

I believed.

And I felt free. (p. 225)

Taylor in 2016

WANT TO KNOW MORE?

"Together with other dedicated advocates, Taylor’s Tale is uniting elected officials, healthcare providers, public health officials, researchers, biotech industry representatives and patient advocates. This important work is creating real, lasting progress in the development of breakthrough treatments and life-changing legislation for rare disease patients."

Also, Linda Phillips most recent YA novel in verse, Behind These Hands, is a story of a young girl struggling with the fact that her two siblings are diagnosed with Batten. It is based loosely on a family in Charlotte. 

GIVEAWAY

This giveaway began in March with Laura's cover reveal. Add your name to that list by January 3 and you'll be in the drawing also. This time you have an extra chance to win since both Laura and I are giving away a copy. Please leave me your email address if you are new to my blog.

Run to the Light by Laura King Edwards: Cover Reveal and Giveaway

Congratulations to Donna Earnhardt who won a copy of OOPHAR THE BLUE from last week's blog.

Run to the Light 

“I cried all the time back in 2006, when we learned Taylor has infantile Batten disease. Somewhere along the way, my life before Batten disease dropped out of sight in the rear-view mirror. I cried less and less. Mostly, I stayed angry. I’m still angry, which is good in a way, because it makes me want to fight like hell. Sadness doesn’t get me anywhere. Lately, I’m feeling worn down, so the sadness is back. When I feel it creep into the corners of my eyes, I run if possible. I love to run for many reasons, one of which is that it makes me feel powerful. Each time my ruined feet and ankles pound against the pavement, I beat back the tide. Mostly, it’s working. I cry very little, but when I do—it’s epic.”

Laura King Edwards
2017

SYNOPSIS

After graduating from college, Laura King Edwards has it all: a great job in marketing, a loving family, a new husband, and a house in her hometown of Charlotte, where she can watch her seven-year- old sister Taylor grow up. But one month after her wedding, Edwards and her family receive shocking news: Taylor has Batten disease. A rare, fatal, genetic disease that will cause Taylor to go blind, suffer seizures, and lose the ability to walk and talk. There is no cure. Edwards thought she’d get to watch her baby sister grow up, but instead she’ll get to watch her die.

Unwilling to take “there is no cure” for an answer, Edwards founds a charity with family and friends, Taylor’s Tale, to save children with the disease. Meanwhile, Taylor starts running with Girls on the Run, completing her first 5K race blind with the help of a sighted guide. Inspired, Edwards, a lifelong runner, begins running in half marathons to raise money and awareness. And to run away from the pain. 

Taylor’s Tale becomes the world leader in the fight against Taylor’s form of Batten disease, but the charity can’t work quickly enough to save Taylor. Stripped of her faith, Edwards falls into a dark despair. But Taylor’s unwavering courage in the face of certain death gives Edwards a renewed sense of purpose to turn her family’s tragedy into an opportunity—to ensure others won’t have to suffer, as her sister has suffered.  

Run to the Light is Edwards’s inspiring account of how she found the courage to face indescribable loss, and of what it means to really believe. 

INTERVIEW

Can you please share a little about Taylor and your journey?

I was 16 when Taylor was born. I already had an 11-year-old brother and didn’t want anything to do with a baby sister. But the moment I met Taylor, I fell in love. 

2006

My sister was beautiful, energetic, smart and healthy — perfect in every way. When I was in college, I used to come home from Chapel Hill on the weekends to spend time with her. But when she was about 7, she started losing her vision and struggling in school. When Taylor was diagnosed with infantile Batten disease my world was shattered. But for the next decade-plus, Taylor’s resiliency inspired me to fight like a bulldog to save her life and those of others like her. 

2007

2016

Tell us about your memoir, Run to the Light. 

I wrote hundreds of short stories before I studied fiction writing in college, but I never planned to write a memoir. In 2006, I was a recent graduate working on a young adult novel when Taylor was diagnosed with Batten disease. My once-healthy sister lost her vision, and her ability to walk, talk, and swallow food. She suffers from seizures and will lose her life at a young age. Yet Taylor always showed the rest of us how to be brave.

Not long after the diagnosis, Taylor’s Tale become the world’s leading charity in the fight against infantile Batten disease, championing historic legislation and groundbreaking, potentially lifesaving research. Despite our success, I’ve struggled at times to accept the fact that I still have to watch my little sister die. 

I wrote Run to the Light after going through a particularly rough time. In 2013, as Taylor fell deeper into the rabbit hole, I lost my will to move forward or my ability to believe in anything good. Then one day, I realized that to survive, I had to learn to “see” the world like Taylor, who never faced her illness with anything less than courage. 

For five months, I trained to become a “blind” runner. That fall, I returned to the same course where my sister ran her first race and completed the half marathon – blindfolded. 

Run to the Light isn’t about Batten disease. It isn’t even about running. Instead, Run to the Light is about how to believe, even if “believe” doesn’t mean what you once thought. It’s about turning a loss into a legacy. 

I wrote this book as a love letter to my little sister and to raise awareness of Batten disease. But I hope it also serves as a testament to the strength of the human spirit. I hope it helps readers find the courage to face whatever they’re fighting in their own lives.

How did running blindfolded help you write the book? 

Before I ran blindfolded, I was at such a low point that I wasn’t just worried about my sister’s survival — I was also worried about my own. It was difficult to wake up each day and find joy or even interest in anything when I knew my once vibrant, healthy sister was dying. 

When I ran “blind,” I had to rely much more on all of my other senses — hearing, touch, smell and even taste (when I ran blindfolded, I could tell a storm was coming by the taste of the breeze). This new perspective helped me recognize the good in a bad situation, too. 

Running blindfolded gave me the will to survive and energized me to capture and share my sister’s amazing story beyond blog posts, social media and public talks. Not long after the race ended, I knew I wanted to write this book. 

Do you have any recommendations to other writers who think about writing a story that is close to their heart? 

If you feel called to share your personal story, don’t hesitate. Focus on getting the words on paper rather than worrying about where the project is headed or if other people will want to read it. True stories have a life of their own, sometimes even more than fictional ones. Let go of all of your inhibitions, and just write.  

Laura and Taylor at their brother's wedding, 2017

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Now for the drum roll.... here is the cover!

Photo by Rusty Williams.
Rusty took the picture on a side street
in Myers Park off Queens Road West, the site of one of the last scenes in the book.

GIVEAWAY

Run to the Light is coming out November, 2018. I'll be reviewing Laura's book on my blog in the fall. Leave your name and email address and I'll start a giveaway list now. Leave it again when I review the book and your name will be entered twice. 

TED TALK

You Heard it Here First--Linda Phillips' Second Novel Finds a Home!

As many of you know, I enjoy featuring my fellow writers' accomplishments. In that vein, I bring you news from my dear friend, Linda Phillips. Just for the record, Linda and I met 18 years ago when Fran Davis, the regional advisor for SCBW (there was no I back then) asked us to put together the 1999 conference. Linda and I hadn't even met before! But we pulled it off and became prayer partners and writing buddies. Here's proof that we are really "joined at the hip" as Linda often jokes.

When we went shoe shopping recently, we chose the same pair!

Without further ado, here's Linda to tell us about her next book.

What's the Pitch for Heart Behind These Hands?

Clair Fairchild is a teenage piano prodigy.  When faced with the news that both her younger brothers are dying of a rare childhood disease, she must reshape her musical dreams.

How did you come up with the idea for Heart Behind These Hands?

While this is not a sequel to my debut novel, Crazy, the seed for the story is buried (unintentionally) deep in those pages. When I needed to assign a devastating disease to a minor character in Crazy, coming up with Batten disease wasn’t exactly random.

I taught at The John Crosland School (formerly Dore Academy) and The Fletcher School, both of which serve students with learning differences.  At Dore, we had a student who was diagnosed with Batten in the third grade, and his younger brother met the same fate shortly afterwards.  At Fletcher a girl was ironically diagnosed by the same doctor in the same month.  This neurodegenerative disease robs children of all vision, mobility, cognitive and language skills. None of them is expected to make it far into their twenties.   

The girl, Taylor King, has a family that has formed a foundation, Taylor’s Tale, that has raised many thousands of dollars for research.  An older sister, Laura King Edwards, follows Taylor’s progress on her blog and has committed to running marathons in all fifty states to raise awareness. She has written a memoir, Run to the Light, documenting her first-hand experience watching the disease steal her sister’s life.

The first thing I did when I wanted to pursue a book with Batten as the villain, was to check with Laura and make sure my plans to write a fictional novel-in-verse depicting characters with Batten did not conflict with her memoir.  

We’ve since read each other’s work and are celebrating that our books will both be released in the fall of 2018. We’ve started to discuss ideas about the marketing possibilities that may present themselves under these fortuitous circumstances.  

What was your path to publication?

I began working on this book about ten months before Crazy came out.  During that time, you were the first (as always) to read my first twenty pages and then I sent off the first draft to my agent, Julia Kenny before I went into debut book frenzy.  She and I exchanged three rounds of drafts over the next year before she sent the first submissions out in early 2016.  It’s been wonderful having an agent both willing and able to step into the editorial role. 

We got some lovely, rosy rejections on that first round, and then a second round went out in Nov. 2016. It was met with silence. We both felt confident about the story and went into it with eyes wide open about the uphill battle that novels in verse can encounter. We even had some discussions about the fact that the country as a whole was in a particular, political funk at the time, because Julia said more than one of her clients was encountering the same eerie silence. If you find yourself in the same position, don’t dwell on these mysteries. Dive into the next thing as quickly as possible no matter how uninspired you feel at the moment. I did, and I’m better for it, and more than halfway into my third book.   

The second most wonderful thing about my agent is that she temporarily cut me loose from the contract to explore small presses on my own, while offering her assistance to review any offers. I spent about a week considering whether or not to try self-publishing and I quickly realized I lacked confidence in handling the process.  I started sending out queries in January, one of which was to Light Messages, a publishing house represented at a joint WNBA/CWC meeting in March.  When I mentioned that I had submitted to them the editor emailed me the next day saying she hadn’t received it.  She requested it, we clicked, and I signed the contract shortly thereafter.  Note about querying:  don’t be shy about following up. You have nothing to lose and everything to gain, like a “misplaced” manuscript.

Why verse?

I get this question a lot, and all I can say is it seems to be the way I think, or I should say, have thought.  I started out just writing poetry, and moving into novels in verse was like floating down river on a lazy summer day.  However, now that I look upstream and see the wake of ambiguities among readers, librarians, students and most of all, publishers, I’m going to hang up the rubber raft for now.  That being said, to keep the metaphor going, in my current work in progress, I’m slogging along the bank in bare feet which requires a different set of skills. I now must write in complete sentences and use a truckload more words than I’m accustomed to. And then there’s all that punctuation and capitalization that needs to be addressed!  But it’s all part of the journey and who amongst us writers doesn’t love the challenge of a brand new learning curve?