Hello friends and neighbors, I am hoping you can help me to help my niece Ashley and her family with some support. Ashley has a son, Ezra, who is fighting a terminal medical battle. He was diagnosed with a rare genetic disorder called GM1. This is a full-time job for Ashley just to give him the care he needs. She also has other children to care for and support. Ashley reached out to me to try to get some help. Please read Ashley’s words below and help me to help her. ❤️ She is doing an awesome job taking care of Ezra and I want to make sure she can continue to do so. Thank you in advance.

As you know, 2025 was the first year we truly began navigating life with Ezra’s diagnosis of GM1 gangliosidosis. GM1 is a rare, progressive, and terminal genetic disorder that affects the brain and nervous system. It causes a steady loss of skills, abilities, movement, speech, swallowing, and breathing, and there is currently no cure. Care is focused on comfort, support, and preserving quality of life for as long as possible. This past year has been incredibly difficult. Ezra has been to the ER or hospitalized over 15 times in 2025 alone. Between appointments, therapies, ER visits, and hospitalizations, he had more than 108 medical-related visits last year. This was the first year of learning how to care for a child with GM1 and everything that comes with it: constant medical monitoring, feeding support through his G-tube, respiratory concerns, seizures, pain management, and frequent illnesses. We believe this may be the last year we have with Ezra due to the progressive nature of GM1 and the decline we are seeing. Our focus now is on comfort, stability, and making the most of the time we have with him. Any funds raised would go toward travel to specialist appointments, adaptive medical supplies not covered by insurance, adaptive equipment to better support his body, in-home support, basic living expenses, and eventual end-of-life expenses and everything that comes with it. I completely understand if this isn’t something you’re able to do. I just wanted to ask because I trust you and know how much you care about our family.

Thank you for taking the time to read this and for always loving us.