Stories of Hope

Stephanie Muckey

Stephanie Muckey admits that she is a Google-searching mom. For her, sitting and watching helplessly while her daughter Kaitlyn suffered was not an option. So, she immersed herself in researching the mystery of Kaitlyn’s sudden bizarre symptoms, trying to exert what little control she had despite fears of what she might find.

IT TAKES A VILLAGE

It takes a village. Four simple words hold such power. For KLS patients and caregivers, the love and support from family, friends, and community can truly make a lasting difference. Jenny Grossman knows this. When her son Cooper was diagnosed with KLS in 2017, it was family, friends, and a KLSF board member – Gaylene Grossman — who provided the comfort and strength Jenny needed to push forward when she felt herself losing hope.

KLS FORUM VIDEOS: JOSH RILEY, KAYLA CROSS, GLENN MARKS

June 6, 2023

The KLS Foundation is grateful to Josh Riley, Kayla Cross, and Glenn Marks for bravely sharing their stories at the KLS Forum in June 2023.

Glenn encouraged KLS patients to have hope for their futures: “I’ve been healthy since 2017. … Every year on my anniversary I think about it, my last episode, and now I’m a lawyer.”

Talking with her college professors about KLS, Glenn had to be assertive: “I wasn’t giving them an option,” she said. “If I go into an episode, you have to work with me.”Watch Glenn’s video.

Kayla talked about the “bittersweet moment” of learning she had KLS and that there is no cure and how special it was to meet other people with KLS for the first time at the KLS Forum.

Kayla was so generous in explaining her experience trying different medications and answering questions from KLS caregivers and patients.Watch Kayla’s video.

Josh’s dreams of being a fighter pilot were interrupted by KLS, and he poetically described KLS episodes as a “separation of body and soul.” But now, Josh is building an amazing life as a soulful musician and is doing “everything I can to raise awareness.”Watch Josh’s video.

KLS FOUNDATION NEWSLETTER: LAUREN HOFFPAUIR’S STORY

August 15, 2022

Lauren writes: “I am 26 years old and have suffered from KLS for more than 10 years. I experienced multiple episodes a year at the age of 15, then an episode every two years, and recently had a lighter episode: I feel that there is light at the end of the tunnel. I’m making a successful life for my family with no looking back.”

KLS FOUNDATION NEWSLETTER: GLENN MARKS’S STORY

November 18, 2022

Glenn writes: “I am finally comfortable saying that I grew out of KLS and don’t think about it every day. While KLS shaped my life, it didn’t define it. I am now a practicing attorney and able to live a relatively healthy life. While there are times KLS still creeps up in my thoughts, it is not debilitating like it used to be. When I was in episodes, I could not advocate for myself, so my mom had to speak for me. Now, as an attorney, I get to advocate for those who do not have a voice and make sure they are heard—just like my family did for me.”

KLS FOUNDATION NEWSLETTER: JAMES LONGSTAFFE’S STORY

April 26, 2022

James writes: “During my adolescence, KLS severely impacted me and my family. From the initial maddening period of being undiagnosed, to missing time and important celebrations and the effect on my school education, it was a very difficult period that I felt would surely define my life. Now, after much thought, I’m proud to say KLS impacted but did not define me.”

KLS FOUNDATION NEWSLETTER: LINDSAY FRIEBERG’S STORY

February 3, 2022

Lindsay writes: “I am 33, live in Toronto, has been married for five years and has two beautiful daughters, ages 3.5 and 1.5, a fulfilling career and wonderful friendships. I have reached the point in my life that I no longer think about KLS every day. A week often goes by before I remember to be grateful for my ability to sleep normally, eat normally, and lead a productive, happy and successful adult life. I think in amazement that the ‘new’ friends I have made throughout the last 6.5 years know nothing about this chapter of my life; they have no idea what plagued me for a decade. I never thought I would get to this place.”