Each of us, throughout some stage in our life, will likely take on the role of a caregiver – of a child, a parent, or even a spouse or friend. Once we take that step, we are notorious for not taking care of ourselves in the same way we provide for others. In my own experience caring for a daughter living with a severe, life-threatening and rare form of epilepsy called Lennox-Gastaut syndrome (LGS), I am all too familiar with the mental burden that caregivers carry with them and the overall tendency to put our own needs last.¹ It can be easy to lose yourself in everyday moments when your time and mental energy are so singularly focused on someone else’s care. Supporting a person who you love not only takes precedence above all else but is reinforced by the rewarding feelings it brings. At the same time, daily challenges can add up, slowly chipping away at your own quality of life and self-care.² 

LGS is a form of developmental and epileptic encephalopathy (DEE) that typically develops in childhood and results in frequent and difficult-to-treat seizures.^1,3 People living with LGS experience a variety of complications, including frequent and severe seizures, significant behavioral and developmental delays, movement and balance issues, and sleep difficulties.^3,4 Even more devastating, they are 24 times more likely to die of premature mortality, including sudden unexpected death in epilepsy (SUDEP).⁵ These ongoing challenges can create significant obstacles for both patients and their caregivers, as the condition often requires consistent and lifelong management to mitigate the dangerous side effects and detrimental impacts on quality of life.^2,5,6,7 

I distinctly remember the terrifying moment I woke to the sound of my 2-year-old daughter, Savannah, making choking noises. Rushing in, we found her convulsing in her crib. I’ll never forget the words of the paramedic that night who said, ‘Her airway is clear, but what you just described sounds just like a seizure.’ That began our difficult journey with epilepsy. 

By age 3, Savannah was experiencing multiple types of seizures and had to wear a helmet. By age 4, she began to have seizure clusters that would last for hours without drug intervention. By age 5, delays in her development were becoming apparent, and she was finally diagnosed with LGS. Upon her diagnosis, we were told by doctors that Savannah would never graduate from high school or live to see adulthood. The scenarios that went through my mind were unimaginable. But what I wish I had known at that time was how incredible Savannah was going to be – her fighting spirit, hilarious quips, and sassy attitude. I didn’t anticipate all of the amazing people our family would meet along the way, including other caregivers going through the same experiences. 

Over the years, I've now witnessed Savannah endure more than 40,000 seizures, a staggering figure even for a medical professional, let alone a mother. Every morning, I check that Savannah is breathing, a routine that underscores that constant feeling of being on guard 24/7 to maintain her safety. Even with meticulous care, this sense of caution never fades. 

During our family’s early years experiencing seizures and utter confusion, I immersed myself in learning all I could about LGS, eventually pursuing higher education to understand the research I was reading.  As my love for science grew, I juggled late nights of studying and raising my children, and my classmates became a new support system. After 12 challenging years, I earned my Ph.D. in neurobiology, driven by the hope of improving the lives of children like Savannah. 

My own research eventually uncovered the mechanism behind Savannah's epilepsy, allowing me to partner with our doctor to find a treatment that works for her. Now, Savannah is 30 years old and sassier than ever – I often think that she is one of the “lucky” ones. Yet, the transition to adulthood has been a struggle, especially knowing that currently, no family support programs exist for long-term adult care planning or for the transfer of primary care for those living with rare epilepsy syndromes. There is a significant need for support to facilitate future medical, legal, and financial planning, ensuring caregivers have access to support at every step of the journey.⁸ In fact, data from a survey, conducted by UCB of parents and adult siblings of people with rare epilepsy syndromes, found that only 22% believed they had adequate access to long-term care planning information.⁸ They shared frustration in finding support and resources and concern about how their loved ones will be supported as they transition into adulthood. 

The frustrations felt by the community drive the work we do at the LGS Foundation. Alongside the efforts of companies like UCB, we now have new ways to connect as a community, raising awareness about the challenges we face as caregivers each day and offering one another support. 

In 2018, UCB partnered with the LGS Foundation and Dravet Syndrome Foundation to compile the Siblings Voices Survey to assess how children adapt to growing up with siblings living with a rare epilepsy syndrome. Grounded in this community insight, the VIP Siblings Project supports people who have a brother or sister with a rare epilepsy syndrome. These siblings are often unselfish, dedicated, and able to see past the challenges, exhibiting understanding and compassion beyond their years. The education provided by the program helps families not only make better informed decisions about their loved ones’ care, but also have more space to care for themselves.

Having the opportunity to collaborate with organizations like UCB allows us to expand our mission at the LGS Foundation even further, surrounding patients and caregivers through every step of their care journey, including the transition into adulthood, and helping them navigate the moments in their lives that matter most. Ultimately, it is those moments of vulnerability, fear, and uncertainty where families like ours who experience seizures need this support.

While it has been devastating to watch what LGS has done to my child, as both a mom and a neuroscientist, I understand, in a profound way, that we must never give up the fight to stop seizures – and we never will. The real war on LGS is being waged at home, in the trenches as I call it, by each family.  
 
To other caregivers, know you are not alone. Know that it is okay to have hope. It is hope that drives my family and my work at the LGS Foundation. With partners like UCB, we are one step closer to offering real solutions for LGS families as together, as we drive forward our relentless pursuit of a seizure-free life.  

Read this story on Today.com.
 
References:

1. Strzelczyk A, Schubert-Bast S. Expanding the Treatment Landscape for Lennox-Gastaut Syndrome: Current and Future Strategies. CNS Drugs. 2021;35(1):61-83.
2. Cross JH, Auvin S, Falip M, et al. Expert opinion on the management of Lennox-Gastaut syndrome: treatment algorithms and practical considerations. Front Neurol. 2017;8:505.
3. Gibson PA. Lennox-Gastaut syndrome: impact on the caregivers and families of patients. J Multidiscip Healthc. 2014;7:441-8.
4. LGS Foundation. What is Lennox-Gastaut Syndrome? Available at: https://www.lgsfoundation.org/about-lgs-2/what-is-lennox-gastaut-syndrome/. Accessed January 23, 2024.
5. LGS Foundation. What is LGS? Available at: https://www.lgsfoundation.org/wp-content/uploads/2023/08/LGS-Fact-Sheet-2023-1.pdf Accessed January 23, 2024.
6. Specchio N, Wirrell EC, Scheffer IE, et al. International League Against Epilepsy classification and definition of epilepsy syndromes with onset in childhood: position paper by the ILAE Task Force on Nosology and Definitions. Epilepsia. 2022;63:1398-442.
7. Auvin S. Lennox-Gastaut syndrome: new treatments and treatments under investigation. Rev Neurol (Paris). 2020;176(6):444-7.
8. Laurie D Bailey, et al. A survey of rare epilepsy parents and adult siblings: to assess resources needed to prepare families living in the U.S. for long-term adult care planning for their loved. Poster presented at American Epilepsy Society Annual Meeting; December 1-5, 2023; Orlando, Florida.

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