Leila Sky was born with a life shortening disease called Cystic Fibrosis.
Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.
Leila takes many medications, both oral and nebulized to slow down this progression. We do chest percussion therapies for 1 hour twice a day every day. When she is sick, these increase to 4x a day. Though Leila eats close to 3,000 calories a day by mouth, she receives an extra 850 calories at night while she sleeps through a feeding tube. Leila takes her daily treatments in stride. Her personality shines brighter than the sun, and you would never guess she was battling a fight that cannot be seen with the naked eye.
She Loves to Dance, play dress up, and tell knock knock jokes!
'Leila' means 'night' in Hebrew. She truly is as magnificent as the Night Sky.
Our wish is for our Night Sky is to shine bright with lots of twinkling stars. She deserves to see as many tomorrows as possible.
There is ZERO government funding for this disease. The life expectancy for those living with CF has continued to raise throughout the years trough fundraising and donations alone. That is why we need your help!
By making a donation, or purchasing Leila Sky's Lucky Stars gear, YOU will officially be one of LEILA SKY'S LUCKY STARS!! All proceeds go directly to the Cystic Fibrosis Foundation on behalf of Leila.
What an honor, to know that when the day comes that CF stands for CURE FOUND, you can say you played a big part of that.
Help us fill our Night Sky up with lots of shining stars, and add more tomorrows for the over 30,000 souls in the US fighting this disease.
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. We walk for them. Will you join us? All we need you to do to become a member of our team is click on the "Join our Team" button. From there you can make a donation and start your fundraising.
By becoming a member of our team and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.