BENEFITING: ICING SMILES
Jaelyn Gunter is a 9 year old with Joubert Syndrome. It is a rare genetic disorder that causes many complications including decreased muscle tone, difficulties with coordination and movement, abnormal eye movements, kidney and liver impairment, and intellectual disability. Despite the many obstacles she faces daily she manages to spread joy to everyone she meets. She lives life with a determination and perseverance that encourages those around her to do better every day. Jaelyn is nonverbal and is currently working to learn sign language to help her communicate Her normal everyday life has always included multiple therapy sessions including physical, occupational, speech, hippotherapy and aquatic therapy. Some of these therapies are not covered at all by insurance but are necessary for her continued development. After years of hard work and perseverance she finally started walking at age 8!! She also has regular doctors appointments to keep on top of the eye problems and her liver and kidney functions. One of the most beneficial events we as a family has experienced has been the opportunity to attend the National Joubert Syndrome and Related Disorders conference. While there we had the chance to meet with specialists and further our knowledge on this extremely rare disease. This was a crucial step that significantly improved Jaes progress, her independence and her overall confidence. We were able to not only gain vital information regarding her syndrome but to meet with other inspiring families and children that shared similar stories and faced the same struggles We left empowered with the knowledge and tools to help Jaelyn in every possible way. We are raising money to attend the next conference in Phoenix, AZ in 2017. Proceeds that exceed travel expenses and conference tickets will be donated to the Joubert Syndrome and RelTed Disorders Foundation to help another family have the chance to attend the conference as well. For more information on Joubert Syndrome visit JSRDF.org. Thank you for your donations!!