In Akron, sixteen-year-old Annie Leeds has been creating “Bracelets for an Adventure!”. All of the proceeds from the bracelets made and sold by Annie go to the “Annie Leeds Adventure Fund”. This fund provides adventures to any handicapped accessible place for chronically ill children and their families to enjoy a day out, free of charge, when the child is not hospitalized.
Annie’s Story
Annie loves to run track, participate in her school musical, read, play sports with her sisters, and do crafts; but due to Annie having Mitochondrial Disease these things are much harder for her to do. Mitochondrial Disease is a group of disorders caused by dysfunctional mitochondria. The mitochondria are the organelles that generate energy for cells. When mitochondria cells fail to produce enough energy for a cell to survive, cells die from lack of energy. Cells that require the most energy die first. It is like trying to run an entire house on a 9 volt battery.
People with Mitochondrial Disease are affected differently but most have multiple health problems and struggle to maintain life. This disease has affected Annie profoundly. Annie is blind in her left eye and has limited sight in her right eye. She is completely deaf (with cochlear implants). She has extreme muscle weakness and has a g-tube for the many medications she has to take. There are many other medical complications associated with Annie’s mitochondrial disease. On top of all that, she is a Type 1 diabetic with adrenal insufficiency. Mitochondrial disease is devastating and it has no cure.
The money from Annie’s Adventure Fund is spent on giving chronically ill kids a day of fun with their families. “Annie’s Adventure” stands for an adventure with their entire family at no charge. Adventures include things such as tickets to a Sabres game, Darien Lake Theme Park tickets, Zoo tickets and any handicapped accessible place. These “Adventures” allow families to have fun without worrying about the cost as most families of chronically ill children struggle to do these types of things due to hospital visits and medical bills. Often times one parent is unable to work due to caring for their medically complex child.
Annie’s bracelet making was driven by her best friend Kenley from California who also had Mitochondrial Disease. Annie and Kenley would make bracelets and send them to each other as gifts. Unfortunately, Kenley’s fight ended when she passed away January 25, 2018 at the young age of 13.
Driven by love and true friendship, Annie began making bracelets to provide to others what she knows she would appreciate herself. Annie wants to continue to give back to those who also have this disease and bring some happiness into their lives.
