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.  

After I Passed: Lillian's Poem

Congratulations to Jo Lynn Worden for winning "You Are Mine, Porcupine." She is my cousin-in-law  and has several porcupettes she'll read the book to!

*******

Some writers use prompts or free writes when they're trying to figure out what their character is thinking or feeling, or what happens next in a story. I use poetry.

Since I'm writing HALF-TRUTHS from Kate's POV, the following poem, from Lillian's POV, may never appear. (If you are new to my blog and are unfamiliar with the young adult historical novel that I am writing, please click on the link.) I wanted to explore how Lillian felt after she successfully passed at the Woolworth's lunch counter. Because she is light-skinned, the waitress doesn't realize she's a Negro. But in order to sit down at the counter, she and Kate walk past her friends who her standing at the end of the counter eating hotdogs. Afterwards, Kate is jubilant because Lillian sat at the WHITES ONLY counter, but Lillian realizes she hasn't proved anything.

*******

AFTER I PASSED 

What does this girl know about me?

Does she think 

I am a chameleon who just blends in with its surroundings?

I think she thinks we’re friends. 

But, how can we be friends when she doesn’t understand

who I am: 

my past, 

my present. 

My struggles,

my people’s struggles. 

She’s like every other white person who thinks she knows what’s best for me.

What did I get in return? 

Humiliation in front of my friends.

They saw me try to pretend.

They saw me try to be someone I’m not. 

They saw me turn my back 

on 

my 

self.

I should have nothing to do with her.
She is white bread without even 

    one 

        pat 

           of butter. 

 **********

If you're a writer, how do you get deeper into your character's POV? If you are a reader, do you consider POV when you read a book? What makes or breaks it for you?

You Are Mine, Porcupine: A Picture Book Review and Giveaway

Congratulations to Jana Leah B. for winning AMERICAN ROAD TRIP on last week's blog.

*****

Fortunately for you and me, Sleeping Bear Press keeps me well stocked in picture books. This week's book, in time to celebrate Valentine's Day, is the sweet picture book You are Mine: Porcupine written by Helen L. Wilbur and beautifully illustrated by Stephanie Fizer Coleman. 

REVIEW

If you've ever wondered about what it's like to be a scared or curious porcupine, you'll find your answers in this book written from Mama porcupine's POV.

"Just a little porcupup

With lots to learn as you grow up."

After that introduction, Mama proceeds to instruct her porcupette (the real word for a baby porcupine!) on what to eat, where to sleep, how to fend off the dangers around him, and when it's time to play.

She shows her baby how to sleep in "porcupine-trees,"

and the little one enjoys exploring his world. Until....he wanders too far and meets a wolf! But his instinct and his mama's lessons pay off.

His mama praises him and they end the night peacefully.

I love the porcu-word play and the vivid illustrations. Teachers, parents, grandparents, and caregivers will enjoy reading this book to their own little porcupines--I can picture many of you reading this with a little one snuggled on your lap. Even though I have provided only a few samples of the illustrations, I hope you can see how the colors convey the mood of the story, ending with bright, peaceful colors in the last spread.  

The last two pages provide more information about the "might fine porcupine."

GIVEAWAY

Interested in sharing this book with your favorite porqupette? Leave me a comment by February 14 and random.org will pick a winner. Please leave me your email address if you are new to my blog. 

American Road Trip: A YA Audio Book Review and Giveaway

Congratulations to Danielle Hammelef who won BREAD FOR WORDS from last week's blog. A word to all of those who also want to win books. Sometimes I run "specials." If you share my post on social media, you'll earn extra chances. That's why Danielle's library is growing. Look for these specials so yours can too!

*****

I'm trying to figure out a good lead-in sentence for American Road Trip by Patrick Flores-Scott. But all I can think to say is, "This is a very good book that young adults should read." Totally unoriginal and unimaginative, but there's my opinion in a nutshell. I listened to this audio book, courtesy of Recorded Books. The narrator, Luis Moreno, portrayed the character's voices authentically. Don't believe me? Listen to this audio clip. 

REVIEW

Teodora ("T") Avila's family is falling apart. Ever since his oldest brother, Manuel, left for the Iraq War, (with his father's blessing, but not his mother's) nothing has been right. His parents lose their jobs and only his mother finds another one. Teodora's older sister Xochitl (pronounced Soe-cheel and nicknamed Xoch) is a fantastic singer who wants to hold their family together. Each family member thinks that when Manny comes back, everything will be better.

But, Manny comes home and it is clear that his presence is not the family medicine everyone hoped for. In fact, he has PTSD, refuses treatment, and turns to drugs and alcohol. T's life is miserable and he's close to flunking out his junior year. When he sees an old friend, Wendy, at the University of Washington ("U-Dub"), he tries to impress her by saying he plans to attend there. 

Their budding romance (mostly through texts) inspires T to hit the books. He is accepted into the AVID program, and gets a job to pay for tutoring. But when Manny punches through a wall into T's bedroom, T escapes to his friend's house. "I'm done hoping for us, but not for me." 

Xoch comes up with a plan. Under the pretense of helping Manny reconnect to good memories, she drives her brothers to see their maternal grandmother. Except T doesn't realize this is the beginning of a long road trip. Manny has his ups and downs, Xoch's old car breaks down several time, and T is furious that his summer plans to prepare for his senior year are ruined. The theme of lying to protect oneself or to get help for someone you love permeates the book.

Along the way, T learns family history that sheds light on his parents, sees Wendy and sparks fly, goes to a funeral for a distant cousin, hears of Manny's suicide attempt, and realizes how messed-up his brother is--and how he truly needs to help him. 

Their road trip ends at Tio Ed's green chile farm in New Mexico. Tio Ed, a Vietnam veteran, understands what Manny is going through and gets him help from the VA and support from other local veterans. 

Wendy ends up at the farm as T's tutor. Although there is clear sexual attraction, they discuss the slippery slope of sex and agree to be intentional; T follows through on his promise to "be a gentleman." They burn off sexual tension building a chile stand together and T discovers a passion for architecture. 

Readers may object to T's occasional offensive language and the references to sex. I was impressed by their mutual decision to exercise restraint and wish other young adult books would follow this example.  

The whole time he and Wendy are together, T fights his fear of failing and showing his "stupid self" to Wendy. When she does find out he lied to her back at U-Dub, he has a price to pay. 

It turns out that everyone has a price to pay. Manny paid a enormous price in Iraq. Xoch decides to make a huge sacrifice for their family which inspires T to make a difficult decision. Although T’s transformation is most obvious, each member of the Avula family has a journey of their own. Who is the hero or heroine? Read the story and decide for yourself. 

Teachers: Click here for an educator's guide.

GIVEAWAY

Leave me a comment by February 8 if you're interested in entering this giveaway. Remember! Leave me your email address if you are new to my blog.