The Letter E
"E stands for Epilepsy, Electroencephalogram, Emergency Room. But for us, most importantly, it stands for Eliott. And for Energy, Enthusiasm, Encouragement, and because we’re a French speaking family, it stands for Espoir (Hope)."
These are the first few words of The Letter E.
I strongly believe in the power of storytelling and sharing your own journey to help others.
My eldest son Eliott has a mutation of his KCNQ2 gene, it's a rare and catastrophic form of genetic epilepsy that usually starts in the first few days of life. He was having seizures in the delivery room. Kids with KCNQ2 will often have global developmental delays, Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), sleep and feeding issues, etc.
When we started our parenting journey, we felt so lost (still do most of the time).
Around the time of his first birthday, I looked for support and comfort in books. I wandered local bookstores to find testimonials of fellow parents who may have shared their journey. I hope that someone else had felt my pain and could help take it away. There was nothing.
The Letter E chronicles our family’s journey of parenting a child with special needs; from his birth and the frightening first months of parenting a child with an undiagnosed condition through to diagnosis, and then learning to live with and embrace the hand we'd been dealt.
I am passionate about diversity and inclusion, and raising awareness for KCNQ2 to help shed light on the rare disease and how it can affect families and everyone around them.
I believe that sharing our story can help others understand what it feels like to welcome a child with special needs and give parents strength and hope in knowing they’re not alone.