It’s hard to forget the videos that were circulated about Charlotte and Gwenyth Gray, two little adorable girls who were diagnosed with a fatal and incurable disease. Their mother, Kristen Gray, has been a beacon of strength for not only her own family, but for others going through similar fates. As anyone with children knows, you will stop at nothing in order to protect them and see them thrive. Kristen was no different, except she has created the Charlotte and Gwenyth Gray Foundation to raise money and awareness for Batten disease and other neurodegenerative disorders who has raised over $7MM for research into this awful disease. We are honored to have Kristen join us in our #MakeYourMarc campaign. Read on to learn more about her story…
At the end of the day, it was always about the children and that was our motivation and never taking no for an answer.
Kristen, both of your daughters, Charlotte and Gwenyth Gray have been diagnosed with Batten disease, a rare neurodegenerative disorder. There is no treatment options or cure and would leave your children blind, immobile and cognitively impaired, and ultimately, gone between the ages of six and 12. Tell us more about this diagnosis.
Charlotte was a typical developing baby and toddler. She met all of her milestones on time and was a great swimmer, enjoyed soccer and gymnastics. She also was very verbal at a young age. After she turned three, we noticed that she started to plateau and in some ways, lose skills like speech and that was the very first obvious sign to us, Charlotte started to get stuck on her words. It was in August of 2014 that we started down the path of uncovering what was happening to our seemingly perfect daughter. After a series of tests with a Neurologist, she told us that she believed Charlotte was mildly autistic, which felt immediately like the wrong diagnosis to Gordon and myself. Not until a series of events that I captured on film was the Neurologist more open to digging a bit deeper into her diagnosis. An EEG in January of 2015 lead to a diagnosis of Epilepsy because she had an abnormal EEG, but she had no seizures so it felt again like the wrong diagnosis. Finally, in February of 2015 Charlotte had an MRI, which led us to Exome Gene Sequencing, which ultimately in March of 2015, lead us to the diagnosis of Batten Disease CLN6. The geneticist told us, it’s rare, fatal and incurable so I suggest taking your daughter home, preparing the home for wheelchairs and making the most of her life. “Oh, and one more thing,” he said, “does she have any siblings, there is a 25% chance her sister could have the same diagnosis.” Two weeks later those same words were repeated to us again.
How did you first start the Gwenyth and Charlotte Gray Foundation? What were your first steps to get it going?
Following Charlotte and Gwenyth’s diagnosis, we immediately went into action to find a scientist, researcher, anyone, that could help us fund the necessary medical research for this very rare disease. We knew we had to raise a lot of money in a very short amount of time as this is a rapidly progressive disease so time was not on Charlotte’s side. In June of 2015, we officially launched the Charlotte and Gwenyth Gray Foundation to Cure Batten Disease and in the first week, we raised $1 million dollars through a big social media campaign.
Is there someone in your life that’s motivated you or inspired you along the way?
I think my strength comes from my mother. She died of Leukemia when I was 13 years old, battling the disease for only three months, my family was not prepared for her death at the age of 40. She always remained positive and strong through what I imagine was a very terrifying time.
Your husband is a producer and you have been able to access some high profile media to help share your story. What has this support been like?
We have been very blessed to have the support of the Hollywood community. Without their efforts, awareness, that first million dollars would have been impossible. They embraced our girls as if they were their own and continued to share our message throughout our journey. Last year, we had a call-a-thon with many of my husband’s colleagues that raised an astonishing one million dollars in just four hours! We just launched another big “push” on Giving Tuesday, November 28th with many of these supporters. The FDA has approved six additional children to be treated and we as a foundation need to raise $800k by the end of the year. We have raised $300 of that $800 so far, so we are hoping this is a huge help in getting us to our goal by the end of the year.
What do you hope to accomplish with The Gwenyth and Charlotte Gray Foundation in the next five years?
We hope to continue to fund the three different areas of research we started funding at the inception or our foundation. We will continue to fund Gene Therapy at Nationwide Children’s Hospital, supporting the children that are accepted into the trial, funding their treatment and continuing the research side of the Gene Therapy program to see long term studies as well as look at alternative methods for delivery. We are very focused on our Small Molecule program with Sanford Lab, we are looking for complementary applications that will help with symptom control and also those children that may not have access to the Clinical Trial and finally Regenerative Medicine, looking at ways to rehabilitate the brain and ultimately regain those skills these children lose when battling this horrible disease. We are hopeful that the research we uncover for Batten CLN6 will also help other neurodegenerative diseases. Our newest endeavor is creating a school for children with neurodegenerative diseases, brain injury and developmental delays. One place where families can bring their child to receive a specialized education as well as the ability to chose from a variety of therapeutic interventions. Coming to the West Side of Los Angeles in 2018!
I think my strength comes from my mother.
You are literally racing against the clock to try to find a cure for your girls. In the past year you have raised over $7MM and funded the first FDA-approved gene therapy. This is amazing. Tell us more about the outlook for the disease.
While we are still in the clinical trial phase, we are all hopeful that this treatment will slow down or stop the progression of this disease. There are still a lot of unknowns but Charlotte and Gwen are almost two years post Gene Therapy transfer and are doing well. If this doesn’t work, we are committed to finding something that will, no child or parent should ever have to hear the words; rare, fatal and incurable. What was once a mad rush to save our girls has now become our life’s work.
I’m sure you must get asked this question all the time but with so much on your plate how are you able to manage it all? Do you have any specific non-negotiables or time management tactics that you can share?
Patience and knowing that no one is perfect. I have had to modify my standards and expectations of being a mom with this huge curveball that we were thrown. We have good days and bad days but we try to stick to a routine and I try not to jam too much into one day, not only for my girls, but also for me. Family mealtime is an important ritual for us. It’s the time to get ready for the day and the time to prepare to wind down the day. I love to cook and believe a well-balanced, healthy diet is very important for everyone. For Charlotte, in particular, this is her fuel, her energy source so the better she eats, the better she does each day and the stronger she becomes. A gluten-free and low dairy diet also help with inflammation, something this disease causes. My other non-negotiable is to try to keep as much of a “normal” life as possible. While difficult, still exposing my girls to everything a “neuro-typical” child would be exposed to. I’ve found that people assume we as a family won’t want to do certain things because it’s harder for Charlotte to navigate new experiences, but quite the contrary. We want to be included and considered still even though our challenges may be greater.
How do you talk to your girls about their disease? How do you inspire them to continue to fight when they are so young?
Both of my girls were born fighters. I try to limit my dialogue about the big picture because there are still so many unknowns. I explained to Gwen, as she looks at her older sister, who was once so vibrant and able-bodied, to tell her that her sister is having a hard time but is working hard to get stronger every day. Gwen takes pride in helping mommy with Charlotte’s daily workouts, either doing them alongside her or holding her hand and supporting her body as we exercise. She is very sweet with her sister.
Was there one moment that you can point to where you really felt your work has been worth it? What was that moment of success?
I would say there are many personal moments but the part of all of this that has been so fulfilling is meeting and guiding all the families that have received this very same diagnosis. I speak to all of the families that have children enrolled in the clinical trial on a regular basis and I sadly receive at least one email a month with a new family that has been diagnosed. I hate that there are more children out there being diagnosed, but I love that I can give them hope, something we had to create when Charlotte was diagnosed.
What was the biggest challenge in starting The Charlotte and Gwenyth Gray Foundation to Cure Batten Disease? Have you overcome it? How?
The biggest challenge was having to learn overnight how to be parents of children with a terminal disease as well as scientists, clinicians, and founders/directors of a foundation. We had to wear so many hats during this journey and it was so personal to us, it was hard to take the emotion out of it when dealing with so many different people. At the end of the day, it was always about the children and that was our motivation and never taking no for an answer.
We have heard the most beautiful stories about women coming together to support one another. Tell us about your support network.
I think there is a perception out there that we bought our way to a treatment because my husband is a producer and has all these connections. The reality is our family and local community as well as my hometown of Naperville, Illinois were the driving force to our success and strength. There were hundreds of people by our side through this, most of our major fundraising came from our network of friends and family, all coming together to fight for our girls and others that suffer from this disease, it was incredibly moving and certainly humbling. There were also many that we didn’t know that sent support, letters of encouragement, art, advice and suggestions. Many people in the Batten community have also been very supportive and a source of inspiration for me.
Do you have any daily rituals or affirmations? How do you take time to care for yourself?
I try to take a few moments for myself each day, whether it be for a walk, a hike or a game of paddle tennis, my new favorite. I need time to unwind, clear my mind and disengage from what are sometimes the harsh realities of day-to-day living. I get up every morning and try to make it my best day for my family and take life one day at a time. If I focus too much on the future, I start to unravel.
Interested in donating? Visit The Charlotte and Gwenyth Gray Foundation to learn more.
Nominate your real life role model for the #MAKEYOURMARC campaign here.
Kristen is wearing the Fancee Slouch Over the Knee Boot from Marc Fisher.
Photo credit: Stevi Sesin
There is no such thing as perfection.
Have the ability to adapt.