STORIES OF RESILIENCE
Meningitis Survivors and Advocates Share Their Journeys
Welcome to another special and poignant episode of the Destiny is Debatable podcast. As we acknowledge World Meningitis Day on October 5th, we are honored to present a collection of heartfelt stories from around the globe, shared by individuals whose lives have been profoundly affected by meningitis.
Christine Bennborn from Sweden recounts the harrowing experience of losing her son, Mathias, to meningitis and sepsis in 2019. Driven by this tragedy, Christine founded Meningokockfonden in Sweden, dedicating herself to spreading awareness and advocating for better vaccination policies.
From Georgia, Shaquille Hodge, who transformed his grief into action after his wife, Percilla, succumbed to meningitis while they were on vacation. Shaquille established the PAMAH Foundation, named in honor of his wife, to educate and raise awareness about this silent killer through car shows and scholarship programs.
Katie Thompson, a meningitis survivor from South Carolina, who faced excruciating pain and near-death but emerged as a passionate patient advocate. Katie's story is a testament to the resilience of the human spirit and a reminder of the importance of vaccination and awareness.
Claytone Musungu from Kenya shares his journey of founding the Meningitis Information Foundation in Nairobi, Kenya after witnessing the devastating impact of meningitis on a close friend’s family. Claytone's efforts to educate the public and work with the government aim to defeat meningitis by 2030.
Jayme Fahrer from New Jersey, who survived bacterial meningitis in 2009. Despite enduring severe physical and mental challenges, Jamie's determination to spread awareness and support others is truly inspiring. Her story emphasizes the urgent need for prompt medical care and the importance of prevention.
Tom Nutt, Chief Executive of Meningitis Now in the UK, sheds light on the critical work of his organization. From funding research and raising awareness to supporting affected individuals, Tom’s insights underscore the multifaceted approach needed to combat this disease. He also highlights the importance of vaccination and knowing the signs and symptoms of meningitis.
John Grimes wraps things up with a reminder of hope. Through his experience with meningitis, he quickly learned that survival wasn’t the end of his journey, it was just the beginning. John also offers his advice on the importance of acting now to shape your life into the future you want.
Throughout this episode, you'll hear powerful narratives of loss, resilience, and hope. These stories serve as a compelling reminder of the impact meningitis can have and the importance of continued efforts to spread awareness and promote vaccination. By sharing their experiences, our guests not only honor their loved ones but also strive to protect others from this preventable disease.
Through these efforts we will not just defeat meningitis, we’ll make meningitis nothing more than a historical footnote.
.:: Destiny is Debatable is a Cemblem production and made possible by the generous support of our listeners and Executive Producer, Erin Grimes.
00:12 - Introduction to Meningitis Awareness
05:43 - Honoring Lives Lost
08:20 - The Birth of PAMA Foundation
14:09 - Personal Stories of Survival
23:04 - A Call to Action
27:18 - The Role of Meningitis Now
32:43 - Hope and Destiny
Director
Founder and chairman Meningokockfonden
Christine started the Meningokockfonden (Meningitis Foundation) in Sweden when her son Mathias died in the summer of 2019 after contracting meningitis and septicemia. She set up the Foundation after becoming aware of how little information and understanding on meningitis there is in Sweden. The primary goal with the foundation is to share information and raise awareness to the public about the symptoms and the possibility of getting vaccinated so that other children and young people can be saved in the future.
Christine has a professional background as a CFO and top-level manager including board positions.
Meningitis Survivor
Bacterial meningitis and I began our difficult relationship in April 2009. During that time, the disease tried to take my life, but thanks to my mother and an incredible team of emergency healthcare professionals, I fought back. At the time, I wasn’t a student in college or boarding anywhere—I was a full-time employee living my life.
After a month in the hospital, surgery to address bacterial burns and nerve damage, months in a wheelchair, and enduring immense pain, I survived what would become one of the most challenging periods of my life. I count myself as one of the lucky ones. I have all my limbs and faculties, but my relationship with bacterial meningitis didn’t end when I left the hospital. Although I was “out of the woods,” the after-effects lingered. Nerve pain and mental health struggles continue to be a part of my life. My body will never be the same as it was before this encounter.
Despite everything, I’m now grateful for where I stand in this journey. It’s taken me a long time to make peace with what happened and who I’ve become. I am proud of who I am today and incredibly thankful for everyone and everything that has supported me along the way.
I share my story to raise awareness about this devastating disease and to show how art and creativity have helped me cope and bring light back into my life. My relationship with bacterial meningitis started as something dangerous and deadly, but now, we walk together—hoping it never forms a bond with anyone else.
Artist, Writer, Advocate
Katie Thompson is an intuitive artist, writer and advocate based outside of Charleston, SC. Her multidisciplinary work explores abstractions of space and self as a disabled woman living in the rural south and has been exhibited and published internationally. She is also the author of children's woodworking book Little Beaver Builds a Bed, and recently created a new podcast, Chronicles of a Dreamworker. Katie is a patient advocate for causes such as meningitis and disability awareness after having a spinal cord injury and contracting bacterial meningitis at 18. She is also the creator of the Women of Woodworking project and serves on the Board of Trustees for The Furniture Society. Katie is married to her husband, furniture maker Joseph Thompson, and they have two children together.
CEO
Dr Tom Nutt is CEO Meningitis Now, a UK-wide charity that funds scientific, medical and social research, raises awareness of meningitis and the importance of vaccines, and provides support to people and families who have been affected by meningitis.
Prior to that, was CEO of an award-winning health charity that aimed to improve health and care services by capturing the voice and lived experience of patients, service users and carers. He has also worked in health and care policy and was originally an academic historian based at the University of Cambridge, where he lectured and researched socio-economic and population history.