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 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