Diagnosed with a rare disorder, Lindsey Edwards wants to leave a legacy

Lindsey Edwards was caught off guard when her mom asked her, “What is it that you want?” 

Growing up, she had become a regular at Dallas and out-of-state hospitals, including Children’s Health. Diagnosed with CLOVES syndrome — short for Congenital, Lipomatous, Overgrowth, Vascular Malformations, Epidermal Nevi and Spinal/Skeletal Anomalies and/or Scoliosis — she has spent years going to physicians to address the many complications caused by the rare disorder, such as pulmonary embolisms, routine cellulitis infections, internal bleeding and pain.  

Her mom’s question was prompted after a particularly bad infection led physicians to perform a surgical procedure on Lindsey’s only somewhat-functioning hand to relieve pressure within a muscle compartment. The procedure left her with virtually no hand function, requiring someone to be with her at all times. 

“We were all feeling the gravity of the situation,” Lindsey said. “My condition worsened so quickly. We hadn’t seen anything like this happen before.” 

When Lindsey’s mom asked her what she wanted, it made her stop and think.  

Lindsey, now 29, knew she wanted to travel and obtain her master’s and doctoral degree, but above all, she realized she wanted to feel fulfilled. For her, while still a young adult, that meant sharing her story and leaving a long-lasting legacy that would endure beyond her. 

“What does it look like for me to continue to tell my story and continue to care for people like me if I'm no longer here?” she thought. 

Her latest health scare reminded her that nothing is given. 

While scrolling on social media one day, she noticed a Children’s Health post announcing its partnership with FreeWill.com, offering people the opportunity to create their will for free.  

“I did it all on my mom’s couch,” Lindsey said. “That was one of the ways in which I felt I could continue to tell my story, even if I wasn't here, and continue to care for other patients like me.” 

Including Children’s Health in her legacy planning inducted Lindsey into the Bradford Legacy Society, which honors donors who commit to leaving a legacy by establishing an endowment or including Children’s Medical Center Foundation in their estate plans.  

The generous gifts of Bradford Legacy Society members, like Lindsey, help make the impossible possible for children for generations to come by providing Children’s Health with the ability to fund growth and expansion and areas of greatest need and impact.  

Most people start thinking about their legacy later in their lives. What made you consider making a legacy gift in your 20s? 

Lindsey: I’ve spent years in theology — the study of religion — and we often ask questions about life and death. You become acutely aware that our lives are finite. 

My own diagnosis and experiences have also made me more aware than most of the fact that I don’t have a guaranteed tomorrow. 

That’s why it’s important for me to be as prepared as possible — not just for myself, but for my family and loved ones.  

We don’t know what’s around the corner, so I encourage others to start thinking about legacy planning and about what they want to do with what they have. 

Why did you choose to include Children’s Health in your legacy planning?  

Lindsey: Out of all the hospitals I’ve been in, my life was most profoundly impacted during my time at Children's Health. It’s where I was deeply shaped as a person.  

I specifically recall a hematologist/oncologist that I didn’t get along with in the beginning. She was bold, had all the answers, knew exactly what we were going to do and how we were going to fix things.  

She thought she had everything figured out and didn’t seem like the type to ever admit to being wrong — until I began experiencing unexplainable health complications at 14 years old. 

She became the most humble, empathetic, compassionate physician and friend that I had ever met.  

My experience at Children’s Health influenced so much of what I do and who I am and the questions I ask and answer in my bioethics research and career. 

Giving back to this place and to the people that gave so much to me — who I will never be able to pay back in full — felt natural.  

As someone who’s included Children's Health in their legacy planning, what do you hope for the hospital system’s future?  

Lindsey: I hope Children’s Health will continue to care for patients as whole human beings.  

I got to see that as a patient — the amount of emphasis that's put on setting up cool playrooms and programs like music therapy or the therapy dogs, which so many people benefit from.  

It’ll be exciting to see how the hospital system expands the resources that help care for patients and families in a holistic way.