Celeste, Tessa, and Colton: A Grandparent’s Perspective

Celeste, Tessa, and Colton: A Grandparent’s Perspective

SLC13A5 Epilepsy affects not just individuals, but entire families. The following perspective, as told by Celeste, TESS Superheroes Tessa and Colton’s Noni, aims to give insight into what it might be like to love and care for someone with SLC13A5 Epilepsy:

Our family’s journey with SLC13A5 Epilepsy has been a whirlwind of emotions and unexpected turns. It all began when my granddaughter Tessa started having seizures as a newborn. Initially we thought that Tessa’s seizures were caused by a stroke. Kim was living in London and I flew back immediately to stay with her for a month. Tessa was my first grandchild and her deteriorating health left us heartbroken and, for many years, searching for answers.

To be honest, Colton’s birth ten years later was an even bigger jolt – we thought he would be perfectly healthy, just like his two healthy sisters who were born after Tessa. I remember I spent the night with Kim in the hospital and was there when we learned that Colton was having seizures. The nurse swooped in and took Colton, and I watched as Kim went running down the hall after the nurse and the baby, dragging her IV pole along with her. Kim called Zach and told him what was happening and they were understandably incredibly upset. It was one of the worst days of my life.

Colton’s journey made researchers zero in on the possibility of a genetic reason for both his and Tessa’s symptoms. This led to the discovery of SLC13A5 Epilepsy and subsequently the founding of TESS Research Foundation by Kim and Zach. Kim’s brilliance and fortitude are the main reason why TESS has been so successful. As her mom, I worry about her – she is dedicated to wanting to help not only her children and family, but all families affected by this disorder. I imagine this is a lot of emotional weight to carry, and it cannot be easy. I am immensely proud of everything she has accomplished.

Today, I’m grateful to be able to spend time with my grandchildren, watching them play soccer, basketball, baseball, and tennis and taking them to their equine therapy sessions. We are so fortunate to have so many inclusive sports teams that Tessa and Colton can participate in where we live. Participating in activities and being active in our community are ways they can lead fulfilling lives despite their challenges. Our journey has been marked by love, resilience, and a shared determination to make a difference.

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