Upon diagnosis of TBCK syndrome a few months after Dallas turned one, his family, Lindsey and James were one of the founding families of our TBCK community, connecting with just the few that had found each other with this very rare diagnosis back in 2018. Their roots in the community are strong and their compassion for other TBCK families even stronger.  Lindsey, a licensed RN, compassionately brainstorms ideas with fellow TBCK families during challenging hospital stays and gives their own insights to questions posed in the TBCK Parent Support Group. All of this comes in tandem with caring for their son who has demonstrated unfathomable strength in response to his relentless seizures and intensive care-giving to give him relief. There’s a reason our kids are called TBCK Warriors, they overcome so many medical complexities and challenges. When asked about what to share with newly diagnosed families Lindsey shares, “I would say to families who have received this diagnosis that it is  devastating and life changing. I would also say that it (TBCK) will teach you more than you could ever imagine. I have learned to be strong when I didn’t know I had it and advocate for my child’s voice and health. There will be many times of joy and sorrow, loneliness and happiness. You will learn to appreciate the easiness of the day that most of us take for granted, the simple things in life like eating, taking a shower, getting up and getting dressed. You will see what true bravery and courage is through these TBCK kids! Take everyday with grace and one day at a time. There will be good days where and there will be days that are so bad you wish you would wake up from this nightmare. Scream, cry, take a break, vent, find your small pleasure and pick yourself up again and be the best version you can be because if our kids can live with TBCK and find joy in their lives and still have the hearts to smile then so can we.”

For many families, the seizure burden of TBCK syndrome is on-going as a common symptom of the disease and such a challenging aspect of the disease. However, families like The McDonel Family prove that finding the perseverance and tenacity to push through is possible and what’s more to support one another along the way. (Dallas is (almost) 7 years old and lives with his family in Florida, USA.)