by Kathryn Wagner, MD PhD
I lost my dear friend, Lilleen Walters to FSHD in August. Lilleen and I met approximately 20 years ago when she and her young son, Collin, came to my clinic at Johns Hopkins for care. I remained their neurologist for many years as they followed me from Hopkins to Kennedy Krieger. Our sons and our daughters were the same ages and it wasn’t long before we crossed over the patient-doctor boundary to become close personal friends.
Lilleen was one of the kindest and most gracious people that I have been fortunate to know. Due to her openness and lack of judgement, she had an eclectic and diverse set of friends. She assumed the best in people, which occasionally led to disappointment but more frequently led to people being their best around her. She was also a fun person—enjoying food, travel and socializing. Although she could never smile at me with her face, she easily and frequently smiled at me and others with her words and her laughter.
Lilleen was a fierce warrior against FSHD. She organized local FSHD Society meetings and emotionally supported many individuals and families. I suggested several of my patients speak to her when they were newly diagnosed and they came away with hope and an understanding that there is a strong community beside them. She battled not only for herself but also for Collin for whom she set a wonderful example. She participated in two clinical trials and tried two surgical procedures in large part, I believe, to increase the medical options for her son as well as the entire FSHD community.
I am so thankful for all that Lilleen gave—to me, to her family and friends, to the FSHD community. What an incredible role model she was to us all.
What terrible news. I remember meeting her and her family several times at FSH events. She did have a spitfire/zest for life. She will be missed and my deepest condolences to her family.
I am very sorry to hear this news – Lilleen impressed me from the moment I met her! So uplifting and approached FSH with such style. She really was the model of “this disease will not define me – I am so much more than that!”. She was her own special person and I am thankful for the time I was able to spend with her.
I appreciate you sharing your thoughts and this lovely tribute, Dr. Wagner. She was a warrior and cheerleader for many.
I’m so sorry to learn this very sad news. Lilleen was a very bright light of pure joy in the dark world of FSHD.
Please give our deepest sympathy to her family.
With sincerest condolences…
I knew her as Suzie. We have been friends since we were 13 years old. We shared the chickenpox and some great fun times and I love her dearly. It wasn’t until later that I learned she had MD. And that my own brother was diagnosed with PGKMD.
MD is a devastating disease. I will forever have Suzie in my heart.