Save A Beautiful Soul - Leon Gellineau

Help Support Leon, the Dedicated Caregiver of My Son with Lennox-Gastaut Syndrome

My name is Elliot Sherer, and I am reaching out to you for help. My son, Nicholas, suffers from a rare and severe form of epilepsy known as Lennox-Gastaut Syndrome, caused by a genetic mutation on the CSNK2B gene. This devastating condition has led to global developmental delay, requiring Nicholas to receive 24/7 care, including managing cortical vision impairment, severe to moderate hearing loss, and countless hospitalizations throughout his 18 years.

In 2019, our lives changed for the better when Leon, a CDPAP Aid for Suffolk County, became Nicholas' full-time aide. Leon’s dedication goes far beyond his responsibilities. For five years, he assisted with Nicholas' educational needs, hygiene, medication, and feedings through a gastric tube. Leon’s exceptional care and innovative approach have made a profound impact on Nicholas' life. For instance, despite professionals doubting Nicholas' ability to be toilet trained, Leon implemented a successful training schedule that has Nicholas well on his way to being fully toilet-trained. Nicholas absolutely adored Leon, who became more than just a caregiver; he was a cherished part of our family.

Leon’s compassion and dedication extend beyond our family. He also provides care for Sue, my partner Marino’s girlfriend, who suffers from a traumatic brain injury (TBI). Thanks to Leon’s intensive work, Sue has defied all expectations and made significant progress.

Tragically, on April 9th, 2024, Leon suffered a massive stroke and heart attack while at work. He underwent emergency surgery to remove a blood clot from his brain, resulting in a six-week hospitalization. Leon lost his ability to speak, read, and write, and now requires 24-hour supervision. He is unable to work, and while we are applying for NYS temporary disability benefits, the process is long and complicated. Additionally, legal fees to navigate becoming Leon’s caregiver have added financial strain. Leon is now being cared for by his loving sister, Gellineau, and attends Roosevelt Freeport Church, where he finds spiritual support. We urgently need funds to pay for extra speech therapy, as his insurance only covers 1-2 sessions per week. Early intervention is crucial for Leon’s recovery.

Leon’s family is under significant financial pressure, and we are hoping to raise enough money to support him until he regains his abilities. Your generous donations can make a world of difference in Leon’s recovery journey. With faith, we believe that all things are possible.

Through the challenges of caring for Nicholas, I have seen the best and the worst of humanity. I am asking for your help to provide Leon with the best possible care and therapy. Any donation, no matter how small, will make a significant impact. Imagine the profound effect of knowing you have supported one of the most compassionate souls I have ever known. Your contribution will truly make our world a better place.

Thank you very much for your support.