My 14-year old granddaughter, Faith, has Cystic Fibrosis and faces an inevitable double-lung transplant. Her story is compelling. Please read it and help her story go viral.
PALM COAST, FL – May 6, 2016 – Faith, my 14-year old granddaughter from North Carolina, loves to dance. She dances on her studio’s Competition Team and dreams of one day dancing professionally. But Faith has Cystic Fibrosis, a genetic disease that progressively affects the lungs and pancreas, resulting in frequent lung infections and poor weight gain. There is presently no cure.
Lung infections are frequent. Some require hospitalization and cause cumulative lung damage. In December 2014, Faith suffered a severe infection requiring a month-long hospital stay that left her with only a 32 – 34% lung function. Any further decrease will necessitate a lung transplant.
In early 2015, Faith’s doctors told her that she could no longer participate in dance competitions. Devastated by this news, Faith grew determined to not let CF keep her from pursuing her dreams. She worked very hard with her physical therapist and was eventually cleared for the 2015 Competition season – one week before the team’s first performance.
In July her doctor expressed pleasant surprise that Faith hadn’t been readmitted to the hospital by then, as had been fully expected. He attributed the absence of further deterioration to dance. Faith turned to her mother and said, “Dance saved my life!”
Although the lung function remains a struggle, Faith continues to dance with the Competition Team. This year she and her instructor choreographed a solo for her – with her oxygen tank built into the choreography – so that, through dance, she could tell her story and share her struggles with CF. She still requires oxygen to sleep at night, as well as for recovery during rehearsals and following each dance routine, but through her perseverance and continued dance activities, she has managed to keep her lung function stable; holding off a lung transplant as long as possible.
The day will inevitably come when the cumulative lung damage catches up with Faith, leaving a transplant as the only option. The strength gained through dance will be vital during the surgery, recovery and anti-rejection regimen. Looking forward to the opportunity to dance freely, able to breathe through healthy lungs, gives Faith both strength and courage.
Please watch her story. Help it go viral. And help by donating if you can at www.gofundme.com/lungs4faith [CF is an “orphan disease.” Research funding comes from donations, not from the government.]