The Jenyis Report
To view a comprehensive progress report of some of our proudest accomplishments over the past 5 years, please click here.
Cheering for Kennedy: Freemont High girls share dreams, friendship with new teammate
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.”
Running blind toward the light
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/
Muddy Bogs and Steep Hills
Some say control is an illusion and if you want to make God laugh, tell Him your plan.
Have you ever tried to prepare for the unknown or anticipated a new situation or challenge and wondered if you had the skill set or fortitude to execute the task at hand?
Last summer, our family signed up for a 7 day overnight campout on horseback through the Teton wilderness in Jackson, Wyoming. At the time, it sounded like an exciting vacation and something totally outside of the box of our conventional choices. But as the date approached, I found myself wondering what on earth I had done! “This was MY idea” I reminded myself. I mean, I was a summer camper and absolutely loved adventures as a child…… but that was 35 years ago. What about the bears? How about taking a shower and washing my hair? What’s it like to sleep outside in freezing temperatures? Trying to prepare for the unknown was consuming and soon I found myself on the floor of my closet, cramming in a week’s worth of riding gear and “survival essentials” into a small duffle bag. Should I take the Icy Hot or Benadryl? Can I take the EpiPen and still have room for the bear spray? I was beginning to realize that the flurry I produced trying to anticipate every possible eventuality, weather condition or unwanted visitor from the wild was a futile effort. Finally, packed with everything I could think of (that would fit), I zipped up my bag…… and just to make God laugh, I forgot my toothbrush.
The Will Hendon Fund’s HOPE Under the Stars Celebrates 5th Anniversary and Raising Nearly $2 Million Locally for Juvenile Batten Disease
HOPE Under the Stars began as a grassroots event for The Will Herndon Fund for Juvenile Batten Disease Research at Beyond Batten Disease Foundation in the Rob Fleming park five years ago with a mission of HOPE to help fund a treatment or cure for the devastating and fatal condition Juvenile Batten Disease affecting then, 6 year old Will Herndon, of The Woodlands. This year, expecting a crowd of more than 700 guests, the 5th Annual HOPE Under the Stars event will be held at a new venue to accommodate a growing crowd of continued and new supporters. The Texas chic event will be at The Woodlands Waterway Marriott Hotel and Convention Center in The Woodlands, Texas on Saturday, September 21, 2013. Doors open at 5:30 pm with a cocktail reception and silent auction. Missy and Wayne Herndon, Will’s parents, will kick-off the program at 7 pm with a research update while guests enjoy a southwestern inspired dinner. The celebration will celebrate the amazing support of The Woodlands community and honor Charlotte and Craig Benson for their work in establishing Beyond Batten Disease Foundation. A live auction will follow the presentation. Much loved New Orleans brass band, The Bucktown All-Stars, will entertain the crowd.
Throughout the evening, guests will have the opportunity to ride a mechanical bull, capture the moment in a photo booth and pose for a souvenir “butt sketch”. A special “HOPE Lounge” created especially for sports fans, will feature a cigar bar, casino tables and showcase the evening’s SEC Football game. Adjacent to the dance floor will be a “HOPE Hideaway” where guests can take a moment away from the excitement to catch up with friends, new and old. Sponsorships and tickets are available at www.willherndon.org or by calling 409-454-9330.
“Our mission is simple: Find a treatment to SAVE WILL. We started HOPE Under the Stars in November 2009, in The Woodlands, to assist in fulfilling our mission. Each year since, this event has grown, providing the means to accelerate research into a treatment and a cure for Juvenile Batten Disease,” said Missy Herndon, Will’s mom, Fund founder. “We are in a literal race against time to save Will and hundreds of children like him. Private funding is crucial to meet our mission. The Woodlands, Houston and Austin communities are helping to make that possible, having contributed nearly $2 Million to date. We are so grateful and full of promise that a treatment is on the horizon”
Beyond Batten Disease Foundation supports research to treat and cure Batten disease, which is a rare, fatal, inherited, neurodegenerative disorder that strikes young children, including 10 year old Will Herndon of The Woodlands. The condition initially causes blindness and seizures, progressively impairs cognitive and motor capacities, and then ultimately results in death during the late teens or early twenties. The Foundation recently co-funded a research library where eleven drug discovery centers across the globe will share promising drug compounds that could treat neurodegenerative disease like Batten disease, Alzheimer’s and Multiple Sclerosis.
Craig and Charlotte Benson of Austin created Beyond Batten Disease Foundation in 2008 after their daughter, Christiane, was diagnosed with Batten disease. In 2009, Wayne and Missy Herndon launched The Will Herndon Fund as part of the Foundation in honor of their son, Will. For more information, visit www.willherndon.org.
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![committeephoto2013[1]](http://dev.beyondbatten.org/wp-content/uploads/2013/08/committeephoto20131.jpg)
Ten year old Will Herndon (center), suffering from juvenile Batten Disease and the inspiration for The Woodlands’ HOPE efforts with a few HOPE Under the Stars. Committee Members preparing for an evening of friendship and HOPE: (L-R) Julie Lile, Angela Gibbs, Nicole Murphy (Event Chair), Will Herndon, Missy Herndon (Will’s Mom and Fund Founder), Carey Bell, DeAnn Guidry, Stevi Venable
Who Will They Be?
I remember a little boy when I was young who was handicapped. I don’ t remember his name, but I’ll never forget the impression he made. Walking for him required effort, his expressions were contorted, and the sounds he made when he spoke seemed involuntary and scary to me as a child. I remember my mother shuffling us past him in the breezeway leading to the sanctuary at church. I’m not exactly sure how I was reminded, but the basic message was to keep walking, and don’t stare, or make his family feel uncomfortable. He was the only handicapped kid from my childhood that I remember.
I’m not sure where children with special needs went to school then, I simply never saw them. How refreshing it is that times have changed. I am amazed today to walk through the halls of Casis Elementary, to not only see these children fully integrated into school, but also to see them so fully embraced by the children who surround them.
Ascend Learning Delivers Grant To Beyond Batten Disease Foundation
Ascend Learning announced it has delivered a $17,710 grant to Beyond Batten Disease Foundation (BBDF), an Austin, Texas based nonprofit focused on developing a test to identify and then treat rare chromosomal diseases. The grant was provided by Ascend Learning’s corporate foundation, the Ascend Transforms Foundation.
“Our corporate foundation is focused on supporting organizations that are seeking transformational change within their field. Beyond Batten Disease Foundation is bringing light to an area that is so often overlooked – rare diseases – and creating a foundation on which future treatments and potential cures can be pursued,” said Essie Eisenfeld Davis, Senior Vice President of Human Resources at Ascend Learning.
“We are grateful for the support of Ascend Learning and its employees. Over the past few years we’ve been able to cross some major milestones in the fight against Batten disease,” said Craig Benson, founder of BBDF. “This grant helps us take an even more strategic approach and apply both greater rigor and resources to our work, ensuring that the most important research to treat and cure this horrific disease gets funded.”
Beyond Batten Disease Foundation was founded by Craig and Charlotte Benson in 2008 after their daughter, Christiane, was diagnosed with Batten disease when she was just five years old. Batten disease is a rare and devastating disease that disproportionately impacts the very young. BBDF seeks to raise awareness and money to accelerate research to find a cure, and develop an inexpensive blood test to detect the gene mutations that indicate Batten disease and more than 600 rare diseases. Dr. Stephen Kingsmore, Director of the Center for Pediatric Genomic Medicine at Children’s Mercy Hospital in Kansas City, Missouri, is advancing the foundation’s initial work.
Ascend Transforms Foundation raised money by issuing a challenge grant to its employees, pledging to match dollar-for-dollar every employee donation. During the employee fundraising drive, Craig Benson visited Ascend Learning’s Kansas City-area campus to personally make the case for supporting Beyond Batten’s mission.
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About Ascend Learning
Ascend Learning is a leading provider of technology-based educational, curriculum and assessment solutions for healthcare and other vocational industries, and specializes in delivering high-performance results for students and professionals. Ascend’s heritage is rooted in assessment and remediation technology and publishing, with industry-leading products that serve secondary, post-secondary, and professional education markets in nursing, allied health, emergency services, fitness and many other health-science professions. Ascend’s family of companies consists of ATI Nursing Education, Jones & Bartlett Learning, ATI Allied Health, Advanced Informatics, National Academy of Sports Medicine (NASM), National Healthcareer Association (NHA), Boston Reed, ClickSafety and ExamFX. With approximately 1,000 employees, the company shares dual headquarters in the Boston and Kansas City metropolitan areas. For more information please visit www.ascendlearning.com.
About Beyond Batten
Beyond Batten Disease Foundation works to cure and prevent Batten disease, a rare, inherited neurological disorder that strikes young children, first causing vision loss and seizures, then cognitive and motor impairment, and ultimately death by the late teens or 20s. The foundation raises funds for research and is leading development of an easy and inexpensive, groundbreaking blood test to detect the gene mutations that cause Batten disease as well as 600-plus, other rare but serious and often fatal childhood ailments. For more information, visit www.beyondbatten.org.