You face a lot of difficult days when you are living with Dravet syndrome. As our Family & Caregiver Engagement Director, Wendy Fry, often says, Living with Dravet, we have high highs and low lows. Our families live in a constant state of flux and never know what is going to be happening with their loved one that day, that week, or a month from now. As caregivers we live with a great deal of daily stress and often feel isolated and alone, and as though we are failing our loved one.
With Thanksgiving just around the corner, it is a reminder to me that I have a choice each day to live with a heart of gratitude. That doesn’t mean that I always do. But during those low lows, I try to take the time to cultivate gratitude to help me through. There is a wonderful quote from physician Albert Schweizer, that reminds me of our community, At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. I am continually encouraged, strengthened, and comforted by members of the Dravet community. Many of you have helped to rekindle my spark and drive on more occasions than I can count, often when I am at my lowest point. You are my tribe.
I am so very grateful for:
- Our patients, whose stories of bravery and resilience continually amaze and motivate me to do more.
- Our caregiver community and their power, generosity, strength, and support. They cheer one another on during the good times and lift one another up during the bad times.
- Our researchers and medical professionals and their unwavering commitment and dedication to our community through their work.
- Our industry partners who have offered clinical trial opportunities and brought us new treatment options for our loved ones.
- Our board of directors who give of their time and talents to guide the organization and help to advance our mission.
- Our staff and their incredible passion and drive to change lives through the work they are doing.
- Our family ambassadors, who support our families to help them feel less isolated, better informed, and more engaged in their loved one’s health outcomes.
- Our volunteers and event coordinators who sacrifice their time to yield amazing benefits for our community.
- Our donors and supporters who share in our mission through their financial gifts and by spreading awareness.
For me personally, with gratitude comes hope, and hope is what I need most on the really difficult days. I am grateful for each you and proud to be a part of such an amazing tribe. I couldn’t imagine this journey without you.