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Aditya

Our journey with Aditya began with hope and joy, but it soon took a turn we could never have imagined. At five months old, Aditya was diagnosed with Infantile Spasms, a rare and devastating form of epilepsy. What started as subtle head bobs quickly turned into terrifying clusters of jackknife seizures. When we first went to the ER, desperate for answers, we were dismissed because the seizures weren’t visible at that moment. But deep down, I knew something was terribly wrong. After fighting for him, we were finally transferred to a children’s hospital where, within 24 hours, our fears were confirmed. He was started on high-dose steroids and Vigadrone, and miraculously, the seizures stopped within a day. But what followed was an eerie silence in his development.

Aditya wasn’t rolling over, crawling, or making eye contact. Every milestone we had once eagerly awaited now became a painful reminder of what he was missing. I spent sleepless nights hopping from one specialist to another, searching for hope, preparing myself for a life with a medically complex child, and grieving the milestones that never came. Gene testing gave us no answers. And with every follow-up EEG showing excessive background slowing, my heart broke a little more. I felt helpless, losing hope, feeling like I was watching my baby slip away from the life he was meant to have.

Then, through a podcast interview, Jim Abrahams with Kelly Cervantes on Cure Epilepsy, I heard about the ketogenic diet. I clung to this new possibility like a lifeline. It was then, that a new doctor who suspected a Vigadrone toxicity entered our lives and urged us to try the diet. We were admitted to our local children’s hospital, surrounded by an incredible team of nutritionists, social workers, and neurologists, who helped us start the diet. But nothing came easy. The prescription formulas made him sick, first with acidic diarrhea, then with severe constipation. I felt like we were reaching the end of the road. I was on the verge of giving up, devastated that this last hope might fail too. And then, a memory hit me: a video I had seen years ago, of Nancy feeding her son Charlie heavy cream. In a desperate moment, we switched Aditya to a simple homemade formula. The results were nothing short of a miracle.

Slowly, almost imperceptibly at first, Aditya began to change. He began to move, to roll over, to crawl. And then, with each passing day, more milestones followed. First physical, then cognitive. It was as if he was waking up, emerging from a fog we had been trapped in for so long. Since May 2021, Aditya has been on this diet, and our world has transformed. He’s now a healthy, vibrant 2-year-old, full of life, energy, and curiosity. He’s meeting every milestone we once thought might never come. He even started talking a few months ago, keeping us on our toes with his laughter and energy. He chases squirrels and bunnies in the backyard, plays joyfully with his sister, and loves snuggling with his dad. The ketogenic diet didn’t just save Aditya, it gave him the chance to live the life he deserves. It gave us back our son. And for that, we are eternally grateful to the Charlie Foundation and every person who supported us through this journey. It’s not just a diet. It’s magic. It’s hope. It’s a second chance at life.

Author

Dawn Martenz

A self-taught keto chef and mom to Charlotte who has been on variations of ketogenic diet therapy for over 10 years for Davet's Syndrome. She's authored 2 ketogenic cookbooks and features new recipes monthly on CharlieFoundation.org.

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