Hi! We are Peter and Gretchen Blow, and we have been searching for a world full of cures, to always bring a smile, and to make us feel safe. We do not come from much and have been through a lot. I am sure everyone has their back stories it is just that what most people go through each day doesn’t touch the experiences we have gone through together. We have three beautiful daughters that we would love nothing more than to give them a world where they can all thrive.

Our 7-year-old, Thea, is amazing. She is witty, remembers everything, and challenges us with new experiences every day. She makes us smile when we need it most, and even though she’s so young, she is the greatest help we could ever ask for. It may seem strange that a 7-year-old is our biggest help, but it involves a very long and complicated version of life with doctors and no answers and parents watching as their first and third children struggle to live. Our first girl, Kenadi (said Ken-A-Dee) is 9 now. She is magical. She is brave and she is strong. Our youngest, Hailey, is nearly 2. She is witty, energetic, and a true adventurer. Kenadi and Hailey fight for their lives everyday against a terrible disease that attacks their brains and bodies. They have Dravet Syndrome. When people reflect on having a bad day they don’t sit and shake through hundreds of seizures like they do. When they have a bad day, they don’t think about how hard their little mind fights to keep up with the other kids. They have passion and drive. They want to be so much more than their bodies will let them. They are “delayed” and “special needs,” but that does not stop any of us. Insert Thea; she has a world of her own with Kenadi and Hailey. They communicate in ways the rest of us don’t understand, and Thea challenges Kenadi and Hailey every day to be a bit stronger, funnier, happier. Together they are a team. An unstoppable force that deserves a world where they can be inspired and create an even greater world for us all. Kenadi doesn’t talk much (side effect of the seizures) but one thing that comes out of her mouth perfectly “mummy, me strong, me be better!” When words like that come out perfectly it must be a sign, am I right? She can’t say her name properly, but she can ask for this world to be better for herself.

I am hoping to share a little bit about us in the form of poetry. I’m sure it’s cheesy, but I think it helps to convey how much we love we have and how much we hope to find a cure and give our girls the world they deserve.

Who We Are and Where We Come From

We are strong-willed and curious
We strive to make a positive difference in the world we reside in
We hear the winds of change and still choose to see the world through colored glasses
We want to show our girls that no matter what, it’s ok to be different
We are strong-willed and curious

We chime in with hope that it will help others notice obvious wrongdoings  
We feel that kids should be able to live in lollipop covered worlds
We are always trying to touch the clouds when we think about our future as a family
We worry that our kids will be subject to the same judgements that have always been around
We cry when we realize how hard it is to actually get people to listen
We strong-willed and curious

We understand that we must always choose to teach and practice open-mindedness
We say that different doesn’t mean less
We dream that we can have an impact on someone who really needs it
We try to speak up for the human component of successes
We hope that our dreams come sooner rather than later
We are strong-willed and curious

We come from “across the pound” and a land where children eat ramen as a proper meal
We come from empty pantries and angry influences
We come from a world of “no” and want to make it into a world of “yes”
We come from playground chalk and pick-up sports games
We come from neighbors  that surrounded us with hate
We I come from influences that we refused to accept and dreams of better tomorrows

We write tonight to share a small fraction of our story and our plea for a new beginning. We have not asked for much these past few years with everything we have gone through, but we are asking for this.  We are asking you for a chance to build an even more amazing life than has been granted to us. We are asking for a world to call home, and above everything else we are asking for a chance to give our girls exactly what they need.

Thank you for allowing us to share our story, for giving us an evening of hope and dreams, and for making 3 girls smile in a way that would never have been possible until we join and find a cure.

#DravetAwarenessMonth
#DyeItForDravet
#GlitchPlease

With our kindest regards and sincerest best wishes,

Gretchen and Peter