By Lindsey’s Family
Our journey with Lindsey, who was diagnosed with Cornelia de Lange Syndrome (CdLS)NIPBL mutation, has been filled with challenges, triumphs, and invaluable lessons.
From medical hurdles like feeding struggles, hearing loss, and seizures to incredible breakthroughs in communication through AAC devices and the positive impact of LENS neurofeedback, Lindsey has shown us what true resilience looks like. These experiences shaped our family—Michael, Lilly, and me—teaching us the power of persistence, love, and advocacy.
Throughout this journey, the CdLS Foundation has been an incredible resource, providing support, guidance, and connections that we have relied on many times. The lack of broader support for families like ours pushed me to create Limitless Compassion, a nonprofit dedicated to providing respite care, a sense of community for children with special needs and their families.
By sharing our story, I hope to inspire awareness, connection, and the change that families like ours desperately need and deserve.
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