Honoring SCN8A Moms
Discover the incredibly powerful bond that SCN8A mothers have with their children. Being an SCN8A parent is extremely challenging yet rewarding. Below, you will hear from SCN8A moms about what being an SCN8A mom means to them. We hope these stories help you get a peek into what life with SCN8A means to us.
Lisa - mom to Ryli
Being an SCN8A mom is such an honor and a blessing in disguise. It means having your heart ache every day thinking about the dreams you had for your child—but never getting to see 90% of them. It also means having your heart flooded with so much love and amazement for your child every day, seeing all the things that they do accomplish while they are running the race of their life.
You learn to look at the glass as half full vs. half empty. The sleepless nights that you are at their bedside don’t mean that you are tired; it only means that you get to spend more hours with them that day than you expected, and that is a blessing.
My little girl has taught me to appreciate the little things in life that get overlooked by many. Every Spring, Ryli and I sit
under one of our blooming trees that blossom for only two weeks in the Spring. We are not sad that the pink colors don’t last; we are happy that we are witnessing such beauty, together. Our life is fragile and perfect.
Mayra - Mom to Andrea
I know that all mothers would give their lives for their children, but being an SCN8A mother goes beyond that. Not only would you give your life for a cure, but I would also give my dreams, my plans, my profession, and all my money. There are no words to describe what I would be capable of, just to see her happy, just to see a day without a crisis…just for a cure for SCN8A.
Tammy - mom to Liam
Getting to cuddle whenever he wants or I want. ( both of us love it) Getting to see the little things that bring him joy. Watching his smile light up a whole room.
Mary - mom to Billy
“Being a mom to a special needs person with SCN8A means your coffee may not always be warm by the time that you get to it, but your heart surely will be from the unconditional love that you receive!”
Megan - mom to Khloe
“Being a mom to a special needs person with SCN8A means your coffee may not always be warm by the time that you get to it, but your heart surely will be from the unconditional love that you receive!”
“Being a mom to a child with SCN8A has taught me to appreciate and celebrate even the smallest of achievements and milestones. The lows of having a child with SCN8A can be very dark but brightened with a smile, hug, or I love you momma!”
Get your SCN8A Mama Bear gear from our store! We also offer gear for siblings, fathers, grandparents and doctors and more!
Learn about the work of the Invitation only SCN8A Research Consortium meeting quarterly to share updates on ongoing work, share assets, and develop new collaborative projects [not sure if we’d open up an application process??]
Learn about the International SCN8A Registry, highlights of what’s been learned and how to collaborate/get access to registry data for planned research projects
Follow the public Facebook group where updates on our programs, research, and new findings from the SCN8A Registry are shared
Learn more about the Alliance’s Global Research Strategy and efforts to accelerate progress toward better treatments and outcomes – and how I might get involved
Be added to the periodic SCN8A Newsletter