Lea Marie Faraone was born July 7, 1990 at a small hospital in Baltimore, MD.
Henry Faraone and Laura O’Donnell were thrilled to have brought a happy healthy baby girl into the world.
The first few years of Lea’s life were nothing out of the ordinary.
She was growing and developing at the expected rate for a toddler of her age. It was not until Lea was about 3 and a half where something seemed different. Lea started to become very uncomfortable after eating. Her parents noticed, in between doctors’ visits, she had not been gaining weight as she had previously.
Her mother, Laura, feared that she was having some sort of digestive issues and began seeking help from her pediatrician. After various tests, doctors diagnosed Lea with Cystic Fibrosis (CF). Her parents were shocked. All of the tests during pregnancy had shown no signs of any diseases. With very little knowledge of CF, they began to do research and ask questions. They were told that CF is a rare, genetic and life-shortening disease. At that time, the average life expectancy was 18 years, possibly 21.
The doctor also went on to say that Lea would most likely face numerous hospitalizations due to frequent lung infections. This would mean being very proactive when it came to germs and colds. Lea would be fighting every minute of the rest of her short life. As parents, Henry and Laura had to think through every detail of their lives now in terms of Cystic Fibrosis. What school would they send Lea to? Would their insurance cover the costs? Where would they live? Would their income be able to support the medical costs? Would they have any more children? Despite all of their worries and fears, they made a decision for their family to live life in a way that was as normal as possible regardless of the illness. The Faraone family stuck to their decision and Lea was able to have a very happy and normal childhood. Lea went to school, hung out with friends, and played sports.
She began to receive CF treatment at Johns Hopkins Hospital in Baltimore, MD. Her home treatment regimen became part of her usual routine. Daily nebulizers, chest percussion therapy and medications became as normal to Lea as brushing her teeth. Henry and Laura welcomed their second daughter, Leeza, into the world in 1994. Leeza was born healthy and free of CF with only one CF gene, making her a carrier of the disease. Lea and Leeza grew up very close and did everything together. Leeza even thought Lea’s CF and treatments were so normal that she wanted to do them too. Leeza loved her daily chest percussion therapy too. Lea’s home environment and family life helped her to grow up thinking that she was not any different than other children. As with any chronic disease without a cure, things progress and change with time.
Lea attended Notre Dame Preparatory School in Towson, MD for middle school and high school. During this time, she started to notice she was a little different. Her Cystic Fibrosis was posing new challenges, resulting in hospitalizations and courses of IV medications. Her treatment regimen evolved into something much more aggressive. She started to realize that other people were not doing treatments every day. While she began to understand that she had a life-shortening illness, she continued on with grace and courage. This time, she made the decision herself to continue live the most normal life she could. She stayed involved with school, friends, and sports. She was always keeping her schedule full of adventures.
Lea became a very engaged participant in clinical research during this time. Her family was told that with progressing cutting-edge research there would be a foreseeable cure in her lifetime. Lea worked very hard to keep herself healthy so she could join all of the best studies where she might have access to new treatments, all while helping to move the cause forward. Lea really began to embrace all aspects of her illness. She and her family became passionate about fundraising, each year raising more money than the last to help find her a cure. They believed if they continued to keep Lea as healthy as possible and advocated for research, that Lea would receive a cure and thus live a long, full life.
When it was time for college, Lea went to Mount St. Mary’s University in Emmitsburg, MD, where she pursued a B.S. in biology. In her third year, all of her hard work paid off and she was accepted into Johns Hopkins University School of Nursing in Baltimore, MD for their accelerated nursing program. Lea would be able to attain both her B.S. in biology as well as her B.S.N. to become a registered nurse in just 5 years. This program would be very rigorous and challenging on its own, much less for a person with the full-time job of having progressed CF. Lea was passionate about medicine and wanted to help other patients like herself. Hospitals, nurses and doctors had made her feel so much better that she wanted to do that for others. Lea graduated from Johns Hopkins in 2014. She went on to work as a nurse for 5 years, caring for chronically ill patients.
Lea was a special nurse because she knew just what to say and do with patients, being one herself. Once Lea finished school and started to work as a nurse, she became more involved with the CF community in her free time. With social media, Lea was able to finally meet others with CF (CF patients are not supposed to be around each other in person due to health reasons). Lea co-created the social media platform Salty Cysters to help bring awareness by sharing her everyday life with Cystic Fibrosis. She also became a co-host of Boomer Esiason Foundation’s Breathe In: A Cystic Fibrosis Podcast where she spoke weekly about CF topics and issues. Lea also spoke at various events for the Cystic Fibrosis Foundation as well as at conferences and to the Johns Hopkins medical students.
Lea became a public figure within the CF community through her advocacy work. Lea touched so many lives through her small acts of kindness and openness to share her story. As Lea became more involved with advocacy work, it became her dream to start her own foundation. She wanted to help children living with all chronic illnesses, not just Cystic Fibrosis. Many of the existing foundations were focused on raising money to find a cure. However, Lea realized that not all patients living now would be able to have a cure in their lifetime: some become too sick, for others, the cure does not come in time. She wanted to help not only future patients but those who are alive and fighting right now.
Lea believed in improving quality of life so that patients could live their life to the fullest while they still could. She wanted to do work to improve quality and extend lives while waiting for a cure.
Lea waited each year for the life-saving medication she needed. Unfortunately she did not get her miracle medicine in time and in December 2018, her health rapidly declined.
Lea passed away on December 13, 2018 at only 28 years old while waiting for a transplant.
The Lea Marie Faraone Foundation was born not only to keep Lea’s memory alive but also to fulfill her dreams of starting a foundation and carry on her work in her spirit of kindness, courage, and adventure.
The Foundation’s mission is to help children and young adults live the fullest life possible in the present. No one should spend their entire life waiting for a cure or as we at LMFF say, “your wings to fly”. So why wait for wings?