Host of SynGAP Research Fund Gala, Past BOT Member
Nancy’s SRF Volunteer Bio is here.
Sister to Caren Leib – Read Caren’s Warrior Story here.
SRF’s Supporting SYNGAP1 Siblings Webpage is here.
My Journey with My Sibling: Embracing the Challenges and Celebrating the Victories
My name is Nancy Kessler, and I want to share my personal journey as Caren’s sister. Caren is 67 years old and was diagnosed with SYNGAP1 in 2020. My hope is that my experiences can help parents or siblings, and ultimately provide comfort or guidance to those who are navigating a similar path.
The Early Years
As a child, I originally thought every family experienced a life like ours; however, I quickly realized that Caren was different. From an early age, Caren faced extreme challenges. She had explosive behaviors, seizures, developmental delays and often hurt those close to her, especially my parents. My parents tried everything they could to help Caren, and in turn, I tried to help them as much as I could.
Caren experienced a variety of different schoolings, medical treatments, and brain therapies. During the late 1960s, my parents made a painstaking decision to send Caren for residential schooling. From this time forward, Caren spent weekends and holidays at home along with visits from her family. In 2013, we moved Caren into a group home to be closer to the family. These times were confusing and difficult for me, but it was also a time of learning, growth, and acceptance.
The Diagnosis
When Caren was diagnosed, it was a moment of clarity and sadness. It gave a name to the challenges we had been facing and opened the door to resources and support. It also helped me to understand my role as a sibling – a commitment to stand by my sister, advocate for her, and to ensure she had the best quality of life possible.
Sadly, our parents passed away prior to her diagnosis. They never knew, and I can only imagine the comfort and passion they would have felt towards the SynGAP Research Fund.
With the goal of making a difference, connecting families, raising awareness and funds to support science, I began volunteering for the SynGAP Research Fund, joined the Board of Trustees, and created an annual Gala. I became passionate about connecting families, as no one should be on this journey alone.
Present Day
Life with a disabled sibling has its challenges. There are days of frustration, resentment; days of exhaustion; and days when the unfairness of it all can be overwhelming. Yet, there are days of amazement, days of joy, and days when I am in awe of Caren’s resilience and strength. Caren is strong-willed and her infectious laugh brings so much joy to everyone near and far.
Silver Linings
Despite the challenges, there are many silver linings. Caren’s disability has taught me patience, empathy, and the ability to appreciate the small victories in life. These lessons influenced my 35-year career as an educator and school psychologist, where I worked with special needs students and their families. Caren is currently shaping another career and has influenced my daughter, Lauren, to pursue a Master of Business and Science degree concentrated in pharmaceuticals.
The Future
As I continue to navigate this journey, I am filled with hope for the future. With the SynGAP Research Fund advancing science and increasing awareness globally of this disability, I am optimistic about what lies ahead for those diagnosed with SYNGAP1-Related Disorders. I have enrolled Caren in every research study available, and my hope is that information about her will help to make a difference in the lives of others.
A Message to Other Siblings
To other siblings of individuals with disabilities, I want to emphasize that it’s okay to feel overwhelmed. It’s okay to need a break and it’s okay to feel a wide range of emotions. But remember – your role in your sibling’s life is invaluable. Your support, your understanding, and your love can make a world of difference.
Thank you for taking the time to read my story. I hope it provides some comfort, understanding, or validation to your own experiences. Remember, we are all in this together.
Best,
Nancy
Listen to Nancy on SYNGAP1 Stories Podcast here.