I became a Warrior Mama in 1982, though I didn’t realize it then.

At 27, I was happily married with a two-year-old son when my newborn daughter, Kimberly, was diagnosed with Sturge-Weber syndrome. Sturge-Weber, what?

Her first surgery for glaucoma was at just six weeks old and was the most challenging moment of my life, handing her over to a stranger I had to trust. Over the years, we faced countless surgeries, seizures, depression, eating disorders, POTS diagnosis, and more. However, her seizures didn’t begin until she was thirty.

But let’s focus on the triumphs. Kimberly graduated high school with honors and earned her MSW from FSU, graduating cum laude. She became the youngest clinical supervisor in NYC and traveled the world, visiting England, Vietnam, Cambodia, Canada, Israel, France, the Netherlands, and Scotland. While researching her condition in her twenties, she discovered The Sturge-
Weber Foundation (The SWF).

You see, my husband and I had given up researching and took things one step at a time. We dealt with whatever was necessary while raising our daughter and now two sons. We didn’t know any other family dealing with Sturge-Weber until two years ago when Kimberly (Kimmi) connected us with Karen Ball, CEO and founder of The SWF. What a treasure trove of information and friendship that was! Kimberly became very active, becoming a member of PEN, speaking with numerous SWS patients and families, and even recording a training video for nurses at Bascom Palmer Hospital.

Karen asked Kim to record her experiences with friends and reflections on turning 40. Karen had flown from Colorado to Florida for a birthday party. Sadly, the video was unable to be made. In November 2019, Kimberly was diagnosed with CML Leukemia. They told us it was the “good kind,” the treatable kind. Yet, we lost her in March 2023.

This past year, Karen kept putting the word “legacy” in my head. She was referring to fundraising. I kept thinking, “Something handed down from the past.” What do you want your legacy to be? How do you want to be remembered? Well, Kimmi took care of Karen’s part on her own. However, I have been trying very hard to work on Kimmi’s personal legacy. How would she want to be remembered? The ironic part is that Kimberly was terrified she would be forgotten.

My family and I attended the SWF International Family Conference this year in Philadelphia in honor of Kimberly. We were supposed to attend two years ago, but life had other plans. Kimberly left an example of “what you can be.” She was stubborn, determined, intelligent, persistent, empathetic, and could not be told “no.” She had a smile no one could forget and a heart of gold. She was loving and so loved.

Kimmi's sister, father, and mother, a.k.a. "Team Kimmi".

When you hear “Sturge-Weber syndrome,” you have two choices:

• Get the best medical care and hide your child from life, trying to protect them.
• Get the best medical care and live life to the fullest! Take your child everywhere, let them participate, and teach them to advocate for themselves.

We chose the latter for Kim, and it made all the difference. We just recently found out how much that was true. We can’t believe how many people worldwide have reached out to us or how many new friends we have because of her. It is so overwhelming! 

Friends are so important when children are young and older.

Kimberly made sure we would be okay. She had already sent her friends to care for us, left a library for her nephews and nieces, created as many memories with them as possible, and left a myriad of pictures with each of us. She also left a singing tribute for my husband and me and one for her brothers, all of which we did not know about or hear until her memorial. Of course, she basically arranged that herself, too.

Please do not be sad. That is not my intention. My intention is to tell you, from one Warrior Mama to the next, do not let Sturge-Weber syndrome define your child or family. We will continue to be Warriors for our daughter. Kimberly’s legacy is to live a large life. 

Love, Margot

The Slater family has set up a scholarship called the "Kimmi's Sunflower Fund" to assist individuals and/or families with non-reimbursable expenses such as travel, lodging, and food while seeking consultation or medical treatment for Sturge-Weber syndrome-related medical matters.

Learn more about Kimmi's Sunflower Fund below.