LIVERMORE – Aura Salon is helping a local couple who have a daughter that has a rare, terminal illness.
February is Rare Disease Month and blue is the color for awareness. The salon is doing $10 blue highlights and all money is donated to the Jamie and Kyle Davis of New Sharon, whose two and a half-year-old daughter, Addilyn has Krabbe Disease. The disease damages the nerve cells in the central nervous system and affects one in 100,000 people worldwide.
“Addilyn has not been doing well and we continue to try to raise awareness,” said Aura Salon owner Linda Flagg.
She is friends with Jamie Davis and follows the family on Facebook, which is how she found out about Rare Disease Month.
If people donate $5 at the Salon toward Addilyn and her family, they are entered into a gift basket contest with more that $100 in items, including retail products, a flat iron, and gift certificates to Aura Salon and Slices Pizzeria, which is located in the same building at 1766 Federal Road.
Flagg noted that money is the number one issue facing the family as they deal with Addilyn’s treatments and hospitalizations. Jamie is a stay at home mom of two girls, and her husband is a self-employed truck driver. Any donations to the family in support of Addilyn are most welcome.
Jamie Davis has written about the family’s experience on Facebook under “Addilyn’s Journey of Hope”. She wants to see genetic testing for the disease at birth. Right now, New York is the only state that automatically tests for it. Genetic testing can inform a person of their carrier status.