Emily’s Story

On January 9th, 1985 at the ripe hour of 10:17 pm, Emily made her debut in the world. She had jet-black hair, porcelain skin and a dimple in her chin.

Her parents were giddy with excitement and sheer shock that they had created such a beautiful baby. Their world was shattered when at six weeks, their sweet Emily was diagnosed with Cystic Fibrosis, a progressive and fatal genetic disease that primarily affects the lungs and digestive system.

Overcome with fear, sadness and complete shock, Emily’s parents made a decision to normalize her life while optimizing her medical care to make her life as long, joyous and fulfilling as possible.

Thirty years, a high school diploma and bachelor’s degree later, Emily is facing advanced — and progressing — Cystic Fibrosis. Each day, Emily spends countless hours on treatments and therapies trying to salvage every ounce of lung function to prolong end-stage treatments like lung transplant for as long as possible. She gets no breaks. No vacations.

While her medical care is a full-time job in its own right, Emily also works at the Penn Social Media and Health Innovation Lab and  graduated with a master’s degree and clinical certification in bioethics. She loves to travel, is an avid tennis fan, enjoys a good laugh and cherishes her friends and family more than anything.

It is with determination, unflappable perseverance and courage that Emily fights for each day with a glimmer of hope in her eye and an insatiable desire for tomorrow.