Ben’s Battle with GM1

Hi my name is Emily, and on December 22, 2023 was a very sad day for my sister and brother in law. They have 4 beautiful, sweet kids but on that day their son Ben, at the age of 9 was diagnosed with a ultra rare disease called GM1 Gangliosidosis. GM1 Gangliosidosis is a horrible untreatable life ending disease that will very slowly take his ability to walk, talk, eat and even smile. Ben is the sweetest boy I know. He showed some concerning signs around the age of 5. He was very clumsy and would fall often. At 7 he could no longer read, write and started losing his speech, all the things he once had. Ben loves animals, fishing and riding his bike but isn't your typical 10 year old boy. They had a plan in place for him to start a gene therapy trial at the NIH April 2024 but at the last minute they found out he had the antibodies they use to compromise his immune system to get his body ready for the gene therapy. Having the antibodies disqualified him completely. Still there is currently no trial available for him. GM1 has no pill, no cure, and is always fatal. I’m raising money for Ben to benefit him for his future, if he would ever need anything he would get it, also to help my sister and brother in law with some of the financial burden of medical bills, eventually need home modifications and vehicle modifications to accommodate for Ben’s deteriorating health.

We still hope and pray everyday for a cure for Ben.