In Honor of JOSH on RARE DISEASE DAY
A Mother’s Story Joshua Eaton, Pioneer in the ARG1-D Community, Age 27 South Shore, Massachusetts We share Josh’s story so his life can inspire others – to support families facing Arginase 1 Deficiency, to raise awareness, and to help ensure no child loses precious time waiting for future care. Josh was more than a diagnosis. […]
A Song for Jackson
This song is dedicated to Jean, my partner, our son Jackson, the children and families affected by Arginase 1 Deficiency, Urea Cycle Defects, and rare diseases. My name is Leafy Wilson. In May of 2017, I started writing this song about the experience shared with my partner Jean, our son Jackson (JT) and his physical […]
Meet Jackson
Meet Jackson, age 30, with parents Jean and Leafy Southern California Living with ARG1-D Jackson, age 30, is a self-described cooking fanatic. It is a joyful family experience, involving his mom Jean and stepmom Leafy, bringing this already close-knit family even closer together. “I love to make Thanksgiving dinner, with all the fixings,” Jackson explains. […]
Meet Nina
At seven years old, Nina has never met a stranger – each person she meets is immediately her friend. Nina loves to paint, to create and would do arts and crafts all day if her parents would let her. “Nina simply has a way of making others feel good,” her mom Casey said. After a […]
Meet Willow
Since the moment her mom Tanja realized she was pregnant, her daughter Willow has been full of surprises. Today, Willow is a nurturing, kind, sweet 10-year-old, who loves her new dog Teddy. She is also thoughtful, strong-willed, and stubborn – qualities she needs as she lives with Arginase 1 Deficiency (ARG1-D). Willow entered the world […]