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 30 minutes 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 1,125 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 play at the park, help around the house, and has a super philosophical mind!
'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.
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.