I’m Josh Adams, and as I share my son Boss’s story, it’s an emotional rollercoaster. His days are marked by an exceedingly rare gene mutation, that at its peek would unleash over 60 seizures a day, stealing away the vibrant joy that once lit up his face. Boss, my resilient son, has faced VNS and G-tube surgeries, explored over 5 medications while hospitalized for over 30 days straight, yet the seizures persist. Doctors here in Southern California have never treated a patient will Boss’s mutation, prescribing over 10 medications in the last year and they couldn’t stop the seizures. Leaving a void where laughter and smiles used to reside. We need to get Boss in front of doctors who actively participate in studies surrounding his rare condition. 

Right now, we urgently seek donations to embark on a journey to Boston children’s Hospital, where renowned epilepsy specialists and geneticists from Harvard have agreed to see Boss to document his rare condition. They might unveil the mysteries surrounding Boss’s illness. Your generosity won’t just cover travel costs; traveling multiple times to Boston it’ll pave the way for treatments addressing the root causes,  providing hope for Boss’s development and providing the best treatment available from the best doctors, who intensely study his specific gene mutation. In addition to Boston, Boss needs to travel up north to see doctors from Stanford, furthering our pursuit of comprehensive insights into his unique case.

These funds won’t only fuel medical interventions but also support tailored physical therapies, feeding therapies, DMI therapies unlocking doors to mobility, communication, and, crucially, the restoration of his infectious laughter and radiant smiles.

Your contribution is a lifeline of hope for Boss to rediscover the joy life once held. Join us on this transformative journey to find answers! Where each donation becomes a step towards halting seizures and bringing back the laughter, the smiles, and the unfiltered joy that Boss deserves. Please help us make Boss’s world a brighter, and happier place.