Both girls suffer from a genetic defect known as Glycogen Storage Disease 1B, which can cause dreadful kidney and liver problems as adults without constant care. Essentially, their bodies lack an enzyme to break down the sugar glycogen, and missing a supplement they take every four hours can be fatal.
Sing Me A Story exists to partner with songwriters and families in need to raise necessary funds by asking the children to write a story, which is then turned into a song and posted online, where donors can download it when they contribute to a campaign.
Deanie Richardson with Sister Sadie shared how they became involved, using a story Victoria had written called Baby Llama.
“Sing Me A Story is an amazing organization doing great things. They saw that we were playing in the DC area (at the Birchmere), and asked if we’d be open to participating in the program since Victoria lived in that area. I was so up for this after I learned what they were about, and read the Llama story from Victoria.
I immediately contacted Dani Flowers from our band. She and I wrote the song to go with Victoria’s story. Victoria felt well enough on our show day to come hang out and let us perform the song for her. We were doing a run of dates with Della Mae that week and thought it would be even more amazing to get them to perform the song with us on stage that night.
I literally sobbed all day that day. Getting to meet this little girl and her family was life changing. It is probably the most incredible and proudest thing I’ve ever gotten to do.
Sister Sadie is going into the studio soon to record this song as well.”
Sing Me A Song has posted a video that tells more about Victoria’s condition, along with Sister Sadie meeting with her and her family to sing Baby Llama.
Hats off to Sister Sadie and Sing Me A Story, and best of luck to Victoria and her family.