Painful medical procedures are difficult to cope with. As a Certified Child Life Specialist, my role is to prepare children for new experiences while providing a coping plan. I had the opportunity to support my own son for a routine blood test this week. He was quite nervous when his pediatrician mentioned it and I could see his signs of distress. I decided to use some child life techniques to help educate and prepare him while providing validation, and a coping plan.
We all know the impact that illness has on a family. When a child receives a diagnosis of a rare and incurable disease, it’s a pivotal moment in the family’s life. Things will forever be changed. I wanted to share a family’s journey through Batten disease. It’s an inspiring story of a sister who never lost hope in searching for treatment while honoring her younger sister’s life with the creation of a foundation, Taylor’s Tale and a memoir, Run to The Light.
Guest Blogger, Laura King Edwards
What motivated you to write Run to the Light?
In 2013, I ran a half marathon blindfolded to honor my then-15-year-old sister. Taylor suffered from a rare disease called CLN1 disease, or Batten disease, and it had stolen her vision some years earlier. After Taylor went blind, she ran two 5Ks with a program called Girls on the Run. Watching my sister overcome incredible obstacles inspired me to run races in her honor.
My first blindfolded race (I did it again when the book was published) started as a PR stunt — a way to get widespread attention for Batten disease. But I never imagined running that race would save my life, too.
I co-founded a nonprofit organization called Taylor’s Tale not long after Taylor’s diagnosis. We funded promising research and surpassed even our expectations. But my sister started to struggle around 2012-13, and by the time I started training to run blindfolded, I’d realized anything we achieved would be too late to save Taylor’s life.
Learning to run 13.1 miles in the dark showed me the depth of my sister’s courage and tenacity. And when I crossed the finish line and took off my blindfold, I understood two things:
- Hope doesn’t have to end even if you lose someone you love.
- No matter what happened, I’d never, ever stop running or fighting — if not to save my sister’s life, then to save future Taylors.
In the days and weeks that followed, I knew I wanted to write a book so other people could understand who my sister had been and the positive change her life had inspired.
About eight months after the blindfolded race, I boarded a plane bound for Oregon, where I’d begin a new journey to run in all 50 states for Taylor. I started writing Run to the Light on that flight.
What has been your biggest challenge in witnessing your sister’s illness?
That’s tough to pin down. I can’t imagine anything more difficult than watching someone you love lose their life to Batten disease. I hated watching Taylor suffer while she was still alive, especially those last few years. But I think knowing what her life could have been if she’d never gotten sick — the life of promise that never came to be — will hurt for as long as I live.
Can you describe your hopes and dreams for those coping with Batten disease?
First, I want people, like my sister and their families to have better quality. It’s easy to wish for treatments and even cures, but we don’t often focus on strategies or efforts to improve the quality of life for patients now. Quality of life is a huge issue for Batten disease or virtually any degenerative or chronic, serious illness. That’s why I’m so proud of Taylor’s Tale’s most recent initiative: We spearheaded and funded the creation of the first care management guidelines for Taylor’s form of Batten disease (CLN1 disease), bringing together clinical and scientific experts from all over the world.
Of course, my ultimate goal has always been a treatment. We’re close to getting there. Taylor’s Tale funded a gene therapy treatment at UNC-Chapel Hill that was acquired by a clinical-stage company called Abeona Therapeutics several years ago. In Run to the Light, I share the story of how we met Steve Gray, the scientist who led the project at UNC.
In May 2019, Abeona reached a huge milestone, getting investigational new drug (IND) clearance from the FDA. In other words, they have the green light to start dosing patients. That hasn’t happened yet, which means we’re still watching kids die. I have so much faith in this gene therapy treatment, I can’t help but feel impatient. I’m hopeful the trial will start soon. I feel certain my sister’s watching, and I hope she knows the extent of the legacy she left. Because of the work she inspired, other families like mine won’t have to suffer.
Do you have any advice for caregivers and medical providers?
For caregivers, especially parents: I know it can be difficult to neglect your own needs, but you have to take care of yourself, too. Caring for someone with a debilitating disease is a 24-hour job. I watched my parents do it for years. You’ll be better for the people you love if you allow yourself to get sleep, eat a healthy diet, exercise and take some time for yourself. Don’t be afraid to ask friends and other family members for help.
For medical providers: Don’t write off hope for patients with a diagnosis like Batten disease. Be willing to think outside the box. Even if you’ve never seen it in your clinic, chances are, someone else has. Are novel or experimental therapies available somewhere else? Parents will go to the ends of the earth to help their children. Also, don’t discount the quality of life. Even if the disease path is a foregone conclusion, you can take measures to help the patient have better quality over the months or years they have left. I know measures like physical therapy and, for seizure control later, the ketogenic diet gave my sister added quality and perhaps even extended her life.
How to get involved
Taylor passed away in September 2018. She was just 20 years old. I think a lot of families would have stopped fighting, and I wouldn’t blame them. But we’re determined not to let Batten disease beat us twice, and Taylor’s Tale still has important work to do. We need your help! Spread the word, purchase my book, follow Taylor’s Tale on Facebook, Twitter, and Instagram so you can stay informed. And, if you feel compelled, donate to taylorstale.org.
With National Rare Disease Awareness Day coming at the end of the month, we would love to share a copy of Run to the Light to one lucky winner.
Choose one or more ways to enter:
1. Sign up for email notifications at ChildLifeMommy.com and leave a comment below.
2. Facebook: Follow Child Life Mommy and tag a friend.
3. Facebook: Follow Laura King Edwards and leave a comment about the giveaway.
Good Luck! The winner will be chosen on 2/22/20.
I am thrilled to feature the co-author, Joan Yordy Brasher and her recently published children’s book, The Donut That Roared. This is a must-have book for any child life program, radiology department or parent of a child with a chronic illness.