On this episode of Raising Rare we speak with Julia Taravella, the mother of two sons with a lysosomal storage disorder called AGU, Aspartylglucosaminuria. 

At 2 years old, her boys first showed signs of speech delays which triggered a long journey to a diagnosis. Her bright, happy and helpful sons who run around the house adventuring, exploring, and learning new things, much as a 6 year old would be, are now in their 20’s and have lived beyond the typical age of someone with their disease.

After visiting multiples doctors and hospitals all over the country it turned out to be an at home test and Julia’s background in chemistry that proved to be an integral part in her son’s diagnosis.

Julia’s story is one marked with hope, perseverance, and love for her sons. To learn more about her sons, updates on their lives, or if you would like to donate please click on any of the links provided.