Harts of Light
We invite you to take part in Great Strides by joining our team. We promise, you belong here! This event promises to be a fun-filled day where you can help advance the care and research needed to cure cystic fibrosis. By walking with us, you’ll enjoy not only the natural camaraderie (yes, lots of laughter!), but the important impact we are making together.
While the CF Foundation has made incredible progress, not everyone with CF can benefit from existing therapies and we still need a cure. This will require time, funding, and persistence – but with you on our team – we are ready to go the distance.
Our team is committed to providing every person with CF the opportunity to live a long, healthy life. Will you join us?
Luci’s Story
At our 20-week anatomy scan, we received a prognosis that would change our lives forever. We were told there was a possibility that our baby could have a condition we had never heard of before, Cystic Fibrosis. Doctors and genetic specialists assured us the chances were low for our baby to have this genetic condition. We went through parental genetic testing and found out that both Andrew and I were carriers of the gene, so there was a 25% chance our baby girl would be positive for CF. The following 20 weeks of pregnancy were fogged by this prognosis, but it didn't change the amount of love and excitement we had to have our baby girl.
When Lucille was born in December 2022, her newborn screener came back “inconclusive,” twice, and searching for clarity, we proactively decided to follow through with a sweat test. At 5 weeks we got Luci’s official diagnosis that she was positive for gene mutations that cause Cystic Fibrosis. Our parental instinct was confirmed, and our world was turned upside down. As fate would have it, Andrew’s network of friends and colleagues were on The Board of the CF Foundation Gulf Coast Chapter and immediately connected us with Texas Children’s CF Team to get help she needed to keep her growing and healthy. Since then, she’s had a team of doctors, nurses and specialists with her, caring for her and loving her since she was 6 weeks old. She takes medication with every meal and does two breathing treatments every day. Because Luci’s CF mutations are so rare, there is minimal documentation about how her CF will progress and she is not eligible for modulators. Luci is in the ~10% of patients who are still waiting on a therapies to address their mutation combination to better improve their CF symptoms. Your donations don’t only go to finding a cure, they support research, community awareness, advocacy, and family support, to improve the outlook of everyone with CF, and especially the 10% like Luci. The CF foundation does not get any government aid like other foundations, it solely relies on generous donations from beautiful people who give.
Aside from her treatments, CF does not define Luci. Luci is a thriving little girl full of life, love and sassiness! She surprises us everyday with her energy and enthusiasm playing with her brother Teddy, riding her balance bike, and taking dance classes with her Mom!
This is our third year joining Great Strides and we are honored to have Lucille as the ambassador for this year’s walk! Monetary donations help the foundation continue working for modulators and a cure, joining us at the walk at the Houston Zoo on May 17 helps our souls to have your support. Thank you for taking the time to read Luci’s story and please join us in raising money and participating in Great Strides at the Houston Zoo this May!
While the CF Foundation has made incredible progress, not everyone with CF can benefit from existing therapies and we still need a cure. This will require time, funding, and persistence – but with you on our team – we are ready to go the distance.
Our team is committed to providing every person with CF the opportunity to live a long, healthy life. Will you join us?
Luci’s Story
At our 20-week anatomy scan, we received a prognosis that would change our lives forever. We were told there was a possibility that our baby could have a condition we had never heard of before, Cystic Fibrosis. Doctors and genetic specialists assured us the chances were low for our baby to have this genetic condition. We went through parental genetic testing and found out that both Andrew and I were carriers of the gene, so there was a 25% chance our baby girl would be positive for CF. The following 20 weeks of pregnancy were fogged by this prognosis, but it didn't change the amount of love and excitement we had to have our baby girl.
When Lucille was born in December 2022, her newborn screener came back “inconclusive,” twice, and searching for clarity, we proactively decided to follow through with a sweat test. At 5 weeks we got Luci’s official diagnosis that she was positive for gene mutations that cause Cystic Fibrosis. Our parental instinct was confirmed, and our world was turned upside down. As fate would have it, Andrew’s network of friends and colleagues were on The Board of the CF Foundation Gulf Coast Chapter and immediately connected us with Texas Children’s CF Team to get help she needed to keep her growing and healthy. Since then, she’s had a team of doctors, nurses and specialists with her, caring for her and loving her since she was 6 weeks old. She takes medication with every meal and does two breathing treatments every day. Because Luci’s CF mutations are so rare, there is minimal documentation about how her CF will progress and she is not eligible for modulators. Luci is in the ~10% of patients who are still waiting on a therapies to address their mutation combination to better improve their CF symptoms. Your donations don’t only go to finding a cure, they support research, community awareness, advocacy, and family support, to improve the outlook of everyone with CF, and especially the 10% like Luci. The CF foundation does not get any government aid like other foundations, it solely relies on generous donations from beautiful people who give.
Aside from her treatments, CF does not define Luci. Luci is a thriving little girl full of life, love and sassiness! She surprises us everyday with her energy and enthusiasm playing with her brother Teddy, riding her balance bike, and taking dance classes with her Mom!
This is our third year joining Great Strides and we are honored to have Lucille as the ambassador for this year’s walk! Monetary donations help the foundation continue working for modulators and a cure, joining us at the walk at the Houston Zoo on May 17 helps our souls to have your support. Thank you for taking the time to read Luci’s story and please join us in raising money and participating in Great Strides at the Houston Zoo this May!
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