The Bravest Family I know...

I

I have known Kristen Kaiser Gray for more than thirty years. Her father hired me to be a nanny to his kids after the sudden loss of his wife Laurel following a short battle with Leukemia. Kristen was fourteen at the time and Ryan was twelve when I came to work with them. They'd scared off more than one caregiver, but I felt uniquely qualified for the role having lost my father just three years before and knowing all too well the hazards of teens left alone without adult supervision. I was up for the challenge.

Working for the Kaisers was the next right step at the time along my twisted journey. I worked with them for less than two years before I moved to Florida for what was to be an opportunity to work with homeless youth. Kristen and Ryan graduated high school successfully. Bob remarried and the family eventually all moved to California. The kids followed their dad’s footsteps by attending USC. Kristen moved to New York. She came with Bob and his wife to my wedding in 1998. Kristen and Ryan both got married and settled down in California to start their families. Ryan had two boys with his beautiful wife.

Then came the birth of Kristen's long awaited first born. A baby girl in 2010. I was thrilled my kids were old enough to allow me to fly solo to California in February of 2011 to meet Charlotte Laurel Gray. These photos are from that visit.

I fell in love with her of course. Look at that smile! Charlotte was the joy that burst in every room much like I imagine her mom was when she was little. Look at these side by side. Same energy.

A few years later another perfect daughter was born, Gwenyth Aubrey Gray.

I had not yet met Gwen when I received a call from Kristen in 2015 with the most devastating news about both of the girls having this unheard of condition, Batten Disease, and all that it meant.

Kristen and her husband Gordon raced the clock to find a cure, starting The Gray Foundation to Cure Batten Disease, to fund research. They became part of a clinical trial, the foundation providing treatment for other families facing the disease. They created The Gray Academy for exceptional children with neurological needs. The couple became a beacon of hope and strength for other families, while still walking through the daily journey of their unexpected life.

The girl's condition was not something that could have been detected. Prenatal tests can't predict such rare diseases. However, because of understanding the genetic variation that causes the disease, the couple was able to create and preserve embryos without the mutated gene responsible for Batten Disease. In 2020 they welcomed Cal and in 2022 Gavin came to complete the family.

In this same course of time that the family was growing, I set my eyes to move West; to be near my daughter who was in college in Orange California, to pursue working with marginalized women and children, to explore what it meant to be an "artist" and "writer" as was spoken like a spell over me a dozen years ago, and to be nearer to Kristen's family in the hope that I could be of some service in her very busy household.

The boys are boundless energy as all two and four year olds are. Gwen is ten with her symptoms much slower progressing than Charlotte's as a result of the treatments. She loves her brothers though she finds them annoying at times like a normal big sister. Charlotte is thirteen. She would be quite tall if she could stand. I have never been close enough to a person with neurological disabilities to face the fears that I think a lot of people have. Because so little is known about the disease, I didn't feel able to look after Charlotte alone. I didn't want to harm her. She can't speak or move and often requires to be suctioned to keep her breathing pathways cleared. Her momma always seems so confident in knowing what she needs. It took some time for me to feel prepared. I finally felt comfortable enough when the family asked me to stay with her on the Fourth of July so they could see the parade in town.

It isn't often the house is without bustle. I talked to Charlotte about how nice and quiet it was. We talked about everyone in her family here and her family that she hadn't met yet. We talked about her memories with Gwen from when they were little and all the wonders of life they experienced. I asked if she remembered what the ocean smelled like and what a sunset looked like. I knew regardless of her eyesight, it was possible she could see, smell, remember. She was right there. Her strong vibrant spirit is present regardless of how her form appears.

It's the same with Gwen. While she is still able to eat and hold herself up, her form is increasingly limited. But Gwennie girl is a fighter like her sister, like her mother. They were not given a choice in their diagnosis as Kristen was not given the choice to be without her mother. But they press on with courage, strength and dignity.

The girls dad Gordon is a producer whose films tend to be about individuals or teams that overcame great obstacles to achieve victory. There is no victorious battle against Batten Disease just yet. But every day is a victory. Every birthday is a victory. This family is doing everything they know to win minutes together.

Kristen's perseverance is renowned. Anyone who knows her comments on her tenacity and strength. "What choice do I have," I hear her say. I nod my head as if to say, "True."

But, she does have a choice whether to be a trailblazer.

She does have a choice when she fights on instead of crumbling.

She does have a choice to keep pressing towards solutions.

She does have a choice whether to make the most of memories that happen in the moments.

February 29th was Rare Disease Day. The reality for families living with a rare disease doesn't change after the day.

It is everyday.

So, in honor of these lovelies I ask:

If you have ears to hear, please consider giving.

If you have eyes to see, recognize the women who are history in the making around you.

If you have a heart to understand, please send ongoing strength and courage for these brave ladies as they walk out their history making journey...