How Running Blindfolded Has Helped Me Cope With My Sister’s Rare Disease

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:

  1. Hope doesn’t have to end even if you lose someone you love.
  2. 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 FacebookTwitter, 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.

4. Twitter: Follow, Like and RT the post to @ChildLifeMommy and @Lkedwards11 

5. Instagram: Follow @ChildLifeMommy and @LauraKingEdwards tag a friend in the post.

Good Luck! The winner will be chosen on 2/22/20.

Video Games in the Hospital, Made Easy

Guest Post, Fully Loaded Electronics

Video game consoles and tablets with entertainment can be essential pieces of a Child Life Specialist’s toolkit. Video games have been shown to reduce anxiety and distract from pain – and those two reasons are why 94% of the Child Life Specialists we talk to say they have video games in the hospital.

If you’ve ever seen an Xbox or PlayStation in a children’s hospital and thought, “Where did that come from?” Your answer is most likely Fully Loaded Electronics.

Fully Loaded Electronics specializes in pre-loading games and entertainment onto video game consoles, tablets, and virtual reality headsets. Our motto is “Video Games Made Easy” – and that’s our goal! We eliminate the hassle of managing game discs and sorting through device settings so Child Life Specialists can get back to doing what they do best.

Here are some examples of what Fully Loaded Electronics services can provide.

The Game Bundles

When you need a new game console with games pre-loaded onto them, start at our Console Family Bundles. These game bundles take the guesswork out of video games. Just pick the system or tablet that is most popular at your hospital and decide how many games you’ll need – we’ll do the rest! All game bundles come with a controller and all necessary connections. When it arrives at your hospital, just plug it into your TV and press the “ON” button – your games will already be on the system, ready to play! And don’t worry about the internet or unwanted content – we’ll set it up so that kids only interact with approved, offline, family-friendly entertainment.

Mobile Gaming Carts

Mobile gaming carts can drastically improve a child’s hospital experience. FLE’s Arcade II Mobile Gaming Cart provides a full gaming experience in any room of the hospital. The small footprint design and medical-grade aluminum build allows the Arcade II to be easily wheeled around the hospital floor and treated the same as other medical equipment. There’s even a handy video guide on how to set up the cart – and it can be done in as little as 30 minutes. Once you have it ready to go, wheel it into a patient’s room and watch their face light up.

Security for Consoles, Tablets, and Accessories

Tablets and game consoles are big investments in your patients’ experiences. You’d never want to have a situation where an iPad goes missing or a game controller walks away. iPads and Kindles can be secured with tethers that adhere to the device and lock to an anchor. Acrylic security cases for game consoles keep the games where they’re supposed to be, and can keep wired controllers connected with the system at all times. There’s even a fake tracking sticker for controllers with an official-looking QR code that leads to an even more official-looking webpage – how funny is that?

We are happy to help with video games in any way possible! All of our systems are backed by 7-day technical support, and you can call us even if the system didn’t come from Fully Loaded Electronics.

Call us at 1-888-506-0219

E-mail at CustomerCare@FullyLoadedElectronics.com

Follow us on Facebook

About the Founder

Shelly Lee founded Fully Loaded Electronics with her husband in 2007 and has helped hundreds of hospitals, hotels, libraries, and other clients to deliver seamless, easy, and fun video game experiences in public spaces. Shelly knows video games provide important community, entertainment, and distraction, and she’s committed to helping public spaces and their staff deliver these benefits to visitors of all ages. Shelly’s 10+ years in the health care video game industry have made her a resource for all of the top 25 children’s hospitals in the United States, as well as major charities including Make-A-Wish, Child’s Play, Gamers Outreach, StackUp and many more. Shelly holds a degree in Political Science from the University of Washington.

How to Help a Child Cope with Divorce

Guest Blogger, Brooke Chaplan

Divorce is a situation that occurs in many households, and if you and your spouse have decided to separate, you should know that you are not alone. Resources certainly exist to help you cope with this new experience, and some of those resources can also help your children. Here are just some of the ways you can help a child cope with his or her parents’ divorce.

Have a Plan

When you first tell your children about the divorce, you likely do not have a detailed plan for exactly how the situation is going to play out. Still though, you can have at least the start of a plan. For example, maybe you have already decided that the children will spend the school weeks with one parent and weekends with the other, or perhaps you can set a schedule for holidays due to religious beliefs that are different from your partner’s. Some of the concerns that arise with divorce have to do with the unknown, and offering children some stable answers can help.

Seek Professional Guidance

You might think that you and your spouse will work through all of the details independently and that you don’t need to seek professional help. However, since you are navigating a new situation, you likely do not realize all of the obstacles that could come in the way. Instead of trying to manage these challenges independently, work with a divorce attorney. This person can help you to make decisions that benefit both your family members and yourself. Without professional guidance, more stress can manifest for you, your partner and your children.

Maintain Routines

If you’ve ever been on a long vacation from work, you may have found that you were craving to get back into a routine at the end of that break. Children can thrive on routines as well. Too many big changes at once can cause additional irritation and stress for your kids. Work to keep them in their regular activities, to bring them to social events with their friends and to prepare meals on a schedule. As you do this, make sure that your children know that they can come to you with any questions they have. Let them take a break if they need to in order to cope, but have the routine in place for when they come back to it.

Do Something Special

In the midst of the divorce, new living arrangements and overall adjustments for everyone, planning any other sort of activity might seem ludicrous. However, think about several months from now when you will likely have at least found a new normal for yourself. Put a special date in the calendar that your kids can look forward to. Depending upon time, budgetary concerns and other factors, you can make this outing as large or as small as necessary and desired.

Children are certainly affected by divorce to varying degrees. Committing to and implementing some strategies can help to make the situation as positive as possible for your kids.

Author Bio

Brooke Chaplan is a freelance writer and blogger. She lives and works out of her home in Los Lunas, New Mexico. She loves the outdoors and spends most of her time hiking, biking, and gardening. For more information, contact Brooke via Facebook at facebook.com/brooke.chaplan or Twitter @BrookeChaplan

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