Sarena is a bright and beautiful young lady who was born with a genetic disease called cystic fibrosis. Since birth she has endured many hospitalizations and procedures along with a daily medication regimen and respiratory and nutritional therapy. Maintaining her health has been a constant battle that has had so many good days but far too many bad days. Although daily life for Sarena is busy, stressful, and tiring, she has managed to excel in academic performance and her teachers rave about what an outstanding and well-behaved student she is. Sarena sees all of her peers as equals because she knows what being different can feel like. Her strongest attribute is her ability to socialize with other children and make them feel a sense of friendship that is both loving and unique.
Recently, Sarena confided in me that every time she makes a wish, she wishes that she did not have CF. She felt that it was useless to continue making wishes because hers has never come true. I had to explain to her that sometimes, it can take a very long time for some wishes to come true. It is my lifelong goal to help make this wish happen, not only for Sarena but for all people who suffer from this disease.
My family and friends started The Friends of Sarena Foundation in 2011 to help raise money for cystic fibrosis research. In 2012, a new drug was approved by the FDA that works on 4% of the CF population and has proven to add decades to the lives of those who qualify. With proper funding and research, it is the goal of the Cystic Fibrosis Foundation to have medications like this available for all people with CF.
The Friends of Sarena Foundation hosts several events throughout the year, so please keep a look out for these. It would be a worthwhile experience and those who attend may be able to meet Sarena and see what a marvelous child she is and a what a sparkling future she may hold.
Love, Sarena's Mom,