Throughout the year, the ArtWorks community meets a Young Artist from one of our programs who has used the creative and performing arts to help them cope with their illness.
ArtWorks is honored to be spotlighting another incredible performance artist, Johanna. Sharing her talents with ArtWorks for the past two Express Yourself New York shows, Johanna is a vocalist who has amazing stage presence and spirit!
Johanna, now 19 years old, was born with CCM3, a rare genetic disease which causes hemorrhages and seizures in her brain. She has had numerous brain surgeries since she was three months old. Through her long journey, music is one big way that Johanna has learned to cope with the difficulties of having a rare disease. She loves to sing and perform. Johanna tells us, “Singing and performing helps distract me from pain and gives me more confidence. And it’s just so much fun!” Johanna and her Mom, Eileen, showcase their creativity and resilience at church and in workshops around the country as they share their story from her mother’s book, “Breathing Underwater; A Caregiver’s Journey of Hope” (http://breathingunderwater.info/). Living in the North Fork of Long Island, Johanna and her family, remain tremendously positive through their faith and, as Eileen says, “their great outlook on life.”
“I don’t let my disabilities hold me back. I know even these struggles have a purpose. I like to share my story with others to let them know they are not alone.” says Johanna. Her choice of song at the ArtWorks’ 2015 show was “Shake It Off” by Taylor Swift. Accompanied by her music therapist, Johanna shared with the audience that her song is a great reminder to all people, with or without disabilities, “…when things get tough, you just have to keep going and ‘shake it off!'” ArtWorks is so appreciative that Johanna continues to display her talent at Express Yourself but also serves as an advocate for our community. We are excited to see what 2016 brings for Johanna!