Tell us about yourself and the Dravet patient in your life
Juniper is our first child and such a joy. Her journey started in California before we moved back to beautiful New Mexico shortly after she was born. We find joy in the outdoors and spending time with family. Watching life through her eyes is the most amazing experience.
When did the patient’s seizures begin?
Her first seizure was at 8 1/2 months old. It was focal aware and we didn’t know that it was a seizure until going to the ER. A month later we ended up getting flown to a larger hospital after an hour long hemiclonic. This was followed by an almost 2 hour long seizure in less than 24 hours prompting the neurology team to order genetic testing due to a likelihood of Dravet. We are new to this journey and what a journey it has been. We try not to take any day for granted and do our best to stay positive. The outpouring of love and support has really helped us stay strong as a family.
What is your hope for the future of your loved one? For the Dravet community?
Our biggest hope is for a cure. We pray that gene therapy is safe and effective and that Juni can receive treatment before she is too big. Regardless of what the future of treatments looks like we just want her to be happy and experience the joys of being a child.
What advice do you have for newly diagnosed Dravet families?
In our short time as Dravet parents we have learned that it is so important to let go of expectations and to take things one day at a time. The days are long but the years are short. Enjoy your child and try not to focus on what the future may or may not look like.