04/05/2021
Our precious little girl.
It has been a hugggee 8 months trying to get to the bottom of your seizures. Mummy and daddy prayed it was just something you would grow out of. Because these seizures are terrifying and take such a toll on your little body and your brain and you realllyy don’t like being in hospital every 2 weeks with infections and blood tests.
But 2 weeks ago we were given a diagnosis... one we wish we could wake up from because knowing what you may face in your life, is almost unbearable.
Dravet syndrome
You are just the most insanely beautiful human, inside and out.. and you always will be. And we never want to see you trapped inside a muddled brain.
We want you to always smile and be full of love and laughter.
We are going to do every fu***ng thing possible to make sure you have the best life possible and never ever tell you how unfair life is. You will only know joy and love.
We are very hopeful that we can get on top of this with help from so many families before you guiding us and new gene therapies coming into play.
We will be strong for you and we will find a cure. And until then, you will live the best life ever with parents and family and friends who simply adore you.
We will fight til the ends of the earth for you and never give up.
We love you and your brother sooo fu***ng much. Don’t ever change 😭❤️
And don’t you dare ever leave.