BBDF Blog

“A Mother’s Story” by Charlotte Benson

republished by The Global Genes Project on December 21, 2013

With the holidays approaching, the children and I have decided to decorate our front yard with characters from our favorite Christmas story: Dr. Seuss’ How the Grinch Stole Christmas.

Twelve years ago, my brother, John, made a Grinch who sat on the front porch at Christmas, and I remember all of the children being fixated on every detail, fascinated with his yellow eyes, bright green skin, and long fingernails. Every wrinkle of his face was animated with a grin that held the awful thought of his plot to end Christmas by stealing it away from the Whos. Every child imagined what it would be like to wake up with no presents or toys, and the Grinch would finally be satisfied that he had put an end to the noise and commotion of Christmas.

So with inspiration from my brother, I struck out to set up tables in the backyard, pulled out the paint and brushes, and began creating our very own Grinch with a jigsaw. One cut led to another, and it seems now we are creating the whole scene where the Grinch is crouched at the top of Mt. Crumpit with one finger on the sleigh full of stolen presents teetering on the edge of a cliff. Overcome with shock and disbelief, he cups one hand to his ear because he hears music and singing coming from Who-Ville beneath. He realizes that his horrific act didn’t stop Christmas from coming……it came anyway! The Whos are standing hand in hand joyfully singing, in spite of the fact that there are no toys and presents.

I must admit, the child comes out in me at Christmas, and I absolutely love the creative process and fantasy of what it will all look like when it is finished. I enjoy the buzz from waking up in the middle of the night with a new idea and the simple mindlessness of painting and cutting. So with the jigsaw humming, and sawdust flying, the whole scene animated itself in a completely new way for me. It occurred to me that not only was I creating a scene from a popular Christmas story, but I was animating a belief that I hold deep at my core.

Life is difficult. People get sick, loved ones die, parents get divorced and at one time or another, we are all faced with pain and suffering. But in spite of how challenging life can be, God promises us what is constant and unchanging and provides us with what will sustain us through any storm.

Batten Disease is a horrible disease that may cripple my child and leave her blinded and perhaps take her away from us too soon. But I remind myself that Batten Disease CANNOT cripple our love, or blind our faith or take away courage or rob our peace or destroy love, friendship, and community. And it will never take away hope.

So my Christmas wish to you is never forget: Nothing….Nobody……Not even the Grinch can steal away your faith, hope, love, and joy!

http://globalgenes.org/dont-let-disease-be-your-grinch-this-christmas-says-mother-of-patient-with-batten-disease/

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by McKenzie Romero in Deseret News

published October 20, 2013

PLAIN CITY, Weber County — From the moment Kennedy Hansen steps onto the field with the Fremont High School cheerleaders, the smile never leaves her face.

“For two hours, she’s a whole different girl,” cheerleading coach Jill Scoffield said.

Two or three cheerleaders are beside the soon to be 16-year-old every moment once the team gets off the bus, laughing and singing Taylor Swift songs. They link arms with Kennedy, guiding her out to the football field, and lay her forgotten cane aside.

She won’t need it as long as “her girls” are nearby.

Once a bright and active little girl who loved to dance, Kennedy was diagnosed in June with juvenile Batten disease, a terminal neurological condition that for the past seven years has been slowly robbing her of her cognitive abilities, motor skills and eyesight.

Kennedy now has the mentality of a 5-year-old, her body is weakening and she can speak only a few words at time.

But the disease hasn’t taken away her dream of being a cheerleader.

An invitation

Kayla McCloy is a senior at Fremont High. When she and a few of her friends heard about Kennedy’s dream, they told Scoffield they wanted her on their team and spent the next week making all the necessary preparations.

Fabric was found to sew a uniform, and pompoms and a hair bow were donated. On Oct. 4, 27 cheerleaders headed to Kennedy’s house to share the good news.

“It really was just the best experience,” Kayla said of visiting Kennedy. “It’s like a miracle of how everything came together.”

Scoffield presented Kennedy with a personalized warmup jacket, running the girl’s fingers across the embroidered letters.

“I asked, ‘Do you know what that says?'” the coach recalled. “She said, ‘Name. Name.'”

Since then, Kennedy has attended one team practice each week and has joined the team on the field for each game, including Fremont’s victory over Viewmont last week.

Her brows knit in concentration as she works to recall the words to each cheer, and she does the best she can to make her body perform the motions she has learned.

Kennedy has even learned to assist with stunts, carefully supporting Kayla’s back or gripping her ankles as the girls hoist her into the air.

Cheerleading takes its toll physically, often leaving Kennedy exhausted or easily confused the next day, but her family said they are amazed at the difference they see when she is on the field or with her teammates.

“There’s a total difference. She’s lost a lot of her personality because her brain is dying, but when she is with these girls, it’s like it comes back, like when she was a little girl,” said Heather Hansen, Kennedy’s mother, as she watched from the bleachers. “She’s energetic and vibrant and just comes alive. She comes alive again. She’s having so much fun.”

Batten disease is full of unknowns, but two things are certain as Kennedy’s health continues to deteriorate: She will soon be left in a wheelchair as she loses the ability to walk or move her limbs, and she will likely lose her life in the next few years.

“We’re just starting to watch these declines happening, and they’re starting to happen more rapidly now,” Hansen said. “So to see her do this, it’s like a little miracle, a little glimpse of heaven. … A month from now, she may not even be able to be out there.”

Doctors can’t provide an estimate of when Kennedy will lose mobility or how much longer she has to live, leaving family and friends carefully watching her condition and enjoying each day. They hope she has enough time left to be able to cheer at a few basketball games, and they share her experiences on a Facebook page.

“It’s so exciting to see her dream come true,” Hansen said. “I can’t get my smile off my face. I come home after every game and my cheeks are sore.”

One of the girls

Kennedy responds instantly when asked, “Who are you with?”

“Friends. Nice,” she says firmly. “Cheerleaders.”

When Kennedy joined the team, the girls took turns going to her house to work on cheers. Now, they go in groups to the Hansen house each week just to spend time with their new friend.

“We just kind of hang out with her. I went and visited her Monday (and) we played Barbies. It was so much fun,” said Jordyn Chandler, a senior on the team.

One thing about Kennedy surprised teammate Kayla: “She loves boys.”

Like any teenage girl, when Kennedy is with her friends she loves to sing along with the radio, talk about boys and plan for the Sadie Hawkins dance she will attend in two weeks, Kayla said with a laugh.

For Jason Hansen, seeing his daughter be “one of the girls” with her new friends has filled a need in her life that no one else could.

“I always felt like we would never see that, (that) I’ll never see her go to a dance, I’ll never see her cheer,” Jason Hansen said. “A lot of these girls were inspired. It’s relieving for our family because we get to see her doing what she always dreamed of doing.”

Watching Kennedy cheer is one of many precious memories Jason Hansen said he’s storing up for the future.

“I just call it our bubble,” he said. “I feel like we have this big bubble surrounding us, filling up with all of these experiences with her — this being one of them. One day the bubble will burst and she will be gone, but all of these wonderful things will rain down on us.”

Lessons from Kennedy

Despite her declining mental state and difficulty speaking, Kennedy has no trouble expressing love for her family and teammates, communicating mostly through hugs. When teammates walk up to Kennedy, they announce themselves by saying their name and accepting her embrace.

“She gives some of the tightest and best hugs I have ever felt,” said sophomore Britton Lucas, who likes to take her guitar to Kennedy’s house for singalongs. “She is just so sweet and willing to get to know everyone and just hug them.”

Each member of the team has learned something different from Kennedy’s example.

For Kayla, it has been gratitude for her health and the strength to improve the cheer and tumbling moves she knows Kennedy would love to be able to do.

Jordyn said she has been inspired by Kennedy’s enthusiasm after watching her cheer without complaint on cold, rainy nights.

And love for Kennedy is spreading through the student body at Fremont High, Britton said.

“I’ve seen a lot more people start to open up and be kind to others,” she said. “And I think more people are starting to realize who (Kennedy) is and how sweet she is. They just come up to her and say ‘hi’ and introduce themselves, and they all want to get to know her.”

But the hardest lesson is still ahead.

“I think that as Kennedy continues to change and her health gets worse, I think some of the girls will struggle with it,” Heather Hansen said. “The great thing is we’re kind of like a new family, and we’re there for each other.”

Knowing that someday soon Kennedy won’t be on the team brings tears to Kayla’s eyes, but she finds strength in the love and faith the Hansen family has shown her.

“Her family is really comforting. They know and (Kennedy) is aware of what’s going to happen, and she’s still as happy as can be. … They comfort us when we should be comforting them,” Kayla said. “Right now she’s living the moment and living her dream, so it makes it easier for us to know that she’s really just going to go home. She’s going to be OK, and we’re going to be OK.”

http://www.deseretnews.com/article/865588782/Cheering-for-Kennedy-Fremont-High-girls-share-dreams-friendship-with-new-teammate.html?pg=2

by Carolina in South Charlotte Weekly
published October 18, 2013

Laura King Edwards has participated in the annual Thunder Road Half-Marathon since 2009. But this year’s race is going to be different for the avid runner – she’s going to run it blindfolded.
Edwards, of south Charlotte, will run the course without the advantage of sight to honor those who’ve fought or are fighting rare diseases. She also hopes to raise funds for gene therapy research at the University of North Carolina at Chapel Hill, as well as increase awareness of different rare diseases.

But her efforts are fueled by something more personal than all that. Edwards’s 15-year-old sister, Taylor, was diagnosed in 2006 with Batten disease – a rare, fatal childhood illness. The genetic disorder involves a missing enzyme needed to clean out the body’s cells. Without the enzyme, cells begin to die, causing blindness, seizures, loss of motor and cognitive skills, speech impediment and, ultimately, death.

“It’s vary rare, but obviously a very devastating diagnosis,” Edwards said, adding the disease affects mostly children, along with some adults, and can manifest itself in multiple ways. “It is universally fatal. If you have Batten disease, at least right now there’s not a treatment or cure that will save you.”

Taylor was 8 years old at the time of her diagnosis. Always a straight-A student, Taylor began having unexplained trouble in school and problems with her vision. After her diagnosis, Taylor and her family were faced with a choice: lay down in defeat or pull out their boxing gloves and get to work.

“They tell you essentially to go home and make happy memories, that there’s nothing that can be done,” Edwards said. “But not fighting is not really in our character. That’s not really how we’re made, and we decided to do something about it.”

Six months after Taylor’s diagnosis, her family founded the nonprofit Taylor’s Tale to help raise money for Batten disease research. But as they walked with Taylor along her journey, the family discovered there are many rare diseases, most of which receive little funding for research and treatments. They decided to focus Taylor’s Tale not simply on Batten disease, but on a broad range of rare illnesses.

“We wanted it to be bigger than one little disease; it’s about rare diseases as a whole,” Edwards said. “There are more Americans with rare diseases than (the number of people) in the entire world (who have) cancer. Ten percent of all Americans have some kind of rare disease.”

Edwards hopes running the Thunder Road course will allow the nonprofit to continue helping fund a gene therapy initiative at UNC-Chapel Hill, which could generate a clinical trial by 2015 if funding continues.

“It’s really exciting to think we can make this happen for kids like Taylor right here in our state,” she said.

But running blind also is very symbolic for Edwards. Blindness hit Taylor in 2008, when she was in fifth grade. Despite the loss of her sight, Taylor was determined to participate in the 2008 Girls on the Run 5K – and did so, tethered by a bungee chord to a fellow runner.

“Watching her cross the finish line is probably the most inspiring thing I’ve ever seen,” Edwards said.

Following in her little sister’s footsteps, Edwards will run alongside a fellow runner, holding an about two-foot bungee chord. Though training has been a challenge – especially her first time running with her eyes closed, which she said was very disorienting – she’s also learned a lot along the way.

“I have learned so much about Taylor’s world, just in training alone,” Edwards said. “You learn so much from the way crickets sound, the way the road feels underneath your feet, the way rain feels. When you remove visual sensory things, the world really gets open to you.”

Edwards, her fellow runners and family plan to wear purple – the signature color of Taylor’s Tale – to “turn the course purple” for Taylor, who’ll hopefully greet her older sister at the finish line.

“I can’t wait to cross the finish line and take off my blindfold in a symbolic move, like running to the light,” Edwards said, “because I hope someday that we can bring the light to many kids like Taylor.”

Follow Edwards’s story through her blog, www.writethehappyending.com, and learn more about Taylor’s Tale at the nonprofit’s website, www.taylorstale.org.

http://www.thecharlotteweekly.com/news/2013/10/running-blind-toward-the-light/