Evelyn and Lucas – A Mother’s Perspective: Choosing Rare

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

Our story is a bit different from the other TESS families as Lucas is our adopted son. My husband and I, both veterinarians, opened our hearts to fostering children with medical needs. Little did we know that our lives would be forever changed by the arrival of Lucas, our superhero son with SLC13A5 Epilepsy.

Before Lucas, we had three biological children and had embraced foster care, initially caring for drug-addicted and shaken babies. Our experiences led the county to recognize us as a family capable of handling children with complex medical conditions, including children who required feeding tubes and were experiencing seizures. One thing I said was that I would never take another baby with a seizure disorder – there are just so many unknowns and so many emergencies.

Then came the call about Lucas on December 19, 2019. We were told he had experienced and was continuing to experience numerous medical issues, including seizures, and that he needed a loving home. Little did we know the challenges that lay ahead.

Lucas’s first prolonged seizure, subtle yet alarming, prompted our first emergency room visit. His medical journey was filled with uncertainties, challenges, and battles. As foster parents, we had little control over his medical care plan. He fell into a pattern where about every 2-4 weeks he would have a prolonged seizure. A short episode for Lucas would be 20-25 minutes and his longest was over 2 hours long. We tried the keto diet once to see if that would help control his seizures, and when he went into ketosis, this actually caused a status episode. He had IV meds administered right away and the seizure still lasted 90 minutes. His seizures were truly drug resistant. COVID-19 also presented new obstacles, affecting his feeding abilities and overall health. However, our resilient superhero continued to fight.

Lucas was officially diagnosed at eight months, bringing frustration and fears about his future. After much deliberation with his birth parents, Lucas was able to stay in foster care with us. We joined the TESS community shortly after this to learn more about SLC13A5 Epilepsy, but could not disclose much information about Lucas since he was a foster child.

Lucas’ adoption was finalized on November 4, 2022, just before his third birthday. Until this day, I had grappled with feeling like an outsider in the TESS community, not knowing if our precious Lucas would stay with us.

Stabilization for Lucas came through a combination of finding more suitable medications and switching to a better neurologist. We celebrated milestones with Lucas — a big one was transitioning from continuous to bolus feeding through a G-tube. Our home remodel plans, with an accessible downstairs bedroom, reflect our commitment to providing the best for Lucas.

As Lucas becomes more stable, I’m eager to be an active part of the TESS community, connecting with others who share similar experiences. The warmth and support we’ve received inspire us to embrace each day with gratitude and love, cherishing the remarkable journey of our superhero, Lucas.