Thank you for joining our family as we help Lucas fight against cystic fibrosis – together with you, we can add more tomorrows for Lucas.
On September 15, 2017 Caio and I became parents to an exceptional, loving, creative, caring baby boy, Lucas. When we learned that Lucas had cystic fibrosis a few weeks later, we decided we were going to fight hard to make sure Lucas has a long and wonderful life, full of the same love and joy that he brought into the world.
It's been an incredible two-year journey supporting Lucas in his fight against cystic fibrosis. From clinic visits and hand wipes, to swallowing pills, eating high-calorie diets and just being a kid - Lucas teaches us every day to just keep smiling, no matter what.
With a smile, Lucas willingly: swallows his own enzymes, starts breathing treatments by himself, reminds us when we forget to wash his hands before eating, removes his shoes before entering the house and takes his daily concoction of medicines and vitamins, then gives us a 'high five' once he's finished.
We are so proud of the many ways he's learning to care for himself, but we know that some of the things Lucas is learning is not typical for a two-year-old, nor should they be. This year has been a great year for the CF community - including the FDA approval of Trikafta, a miracle drug. But Lucas is still not old enough to take it. We are hopeful Trikafta will help Lucas, but the drug only works for one of Lucas mutations. In addition, it's only addressing part of the problem CF causes. Infections are another concern as Lucas gets older. We need better and more powerful antibiotics and treatments for bacteria and other antibiotic-resistant superbugs. And the good news is that these drugs are being developed right now.
We Stride to raise funds that will help us get closer to cure, get better drugs, medicine and treatments to patients who need it most, and to one day, end Lucas regimen of:
Taking hundreds of pills per month: Including enzymes before eating any snacks or meals, to stay healthy. Sometimes more when he's sick.
60-120 minutes of Airway Clearance per day: Starting the day each morning, and going to be every night, doing rounds of airway clearance therapy – and every 4 hours when there’s a cold. Lucas wears a vest, connected to a large machine that will shake to help move the mucus out of the lungs. We must travel everywhere with this.
Being 'Always On' to avoid germs: For an exploring and curious toddler, it means being rigorous about washing hands, eating food that’s been properly washed and clean, wiping down public spaces at airports and parks – and being an advocate for people he is around who don’t have the same standards of cleanliness.
A life expectancy: This is the reality Lucas will face every day – it is a number that we refuse to define our son, and it is a number we hope we can keep raising with your help.
Come join us at Great Strides and walk to celebrate the amazing progress made by families, doctors, researchers and scientists – and how we can keep raising this number together. Support TEAM LUCAS by donating or participating in our Great Strides Walk to help Lucas live a long and wonderful life. Specifically, here's how you can help
1. To walk with us at the event: click on the 'Join our Team' button and select 'walker'. From there you can donate and/or start your fundraising. Joining our team is free and does not require a donation or fundraising, however, fundraising IS encouraged! The more resources we have for research the better!
2. Can't attend the walk but still want to support and donate: Click on the 'Join my Team' button and select 'virtual walker'. You guys are our online force who are driving donations in your community and diligently bringing in money. Once you register you will then be given a link that you can share with friends and family. All donations are tax deductible!
3. Help share Lucas story with friends and on social media: Sharing Lucas journey and educating others is one of the most impactful things we can do. We’ve come a long way, but cure is still needed and when you can spread the word by sharing a personal story – it’s more impactful!
For ALL walkers and virtual walkers who gather donations from friends, co-workers and family in the amount of $100 or more - you will receive a Great Strides T-shirt.
Thank you for the constant prayers, encouraging messages, hugs and thoughts. We know it takes a village. Your support and fundraising dollars are laying a strong foundation of support for Lucas to continue to fight and live a long and wonderful life.
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.