It’s been three months since we found out Joey has a lysosomal storage disorder, two since the official diagnosis.  My concept of time has changed completely.  In some ways it’s been three very long months – many, many sleepless nights, a gazillion doctor appointments, meetings upon meetings with various agencies including two with Hospice of … More Three Months Later

This is a blog about Josiah, our youngest son, and his journey as he battles GM1 (infantile gangliosidosis). A baby with Infantile GM1 gangliosidosis usually appears normal until onset (usually by 6 months of age), but developmental regression eventually occurs.  Signs and symptoms may include neurodegeneration, seizures, liver and spleen enlargement, skeletal irregularities, joint stiffness, distended … More Joey Bear