Luci
We invite you to take part in Great Strides by joining our team. We promise, you belong here! Last year we raised $8,705!!! We could not have done it without YOU! We surpassed our goal and raised so much together for a cause that is changing lives and will one day be life changing for Luci. For the ones who have been with us, thank you, for the ones who are new, welcome, we are so happy you are here!
We've changed our team name to Luci because this team is hers and we work so hard to raise money for her and everyone else without modulators. Luci is our motivation to keep fundraising, we will never stop.
Thank for being here, reading, joining us on the walk and donating, we couldn't do it without you!
This August, Luci started preschool and has endured great changes to her daily schedule and routines, nonetheless, she is loving school! Every morning she’s up at 6 a.m. doing her chest treatments without skipping a beat, she is our daily motivation and reminder of strength and resilience. Aside from her treatments, medications, and routines, CF does not define Luci. She is a thriving 3-year-old full of life, love, and sassiness! She surprises us every day with her energy and enthusiasm, playing with her brother Teddy, riding her balance bike, and being an absolute natural at gymnastics.
This is our fourth year joining Great Strides. Monetary donations help the foundation continue working for modulators and a cure, joining us at the walk at the Houston Zoo on May 16 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 next May!
While the CF Foundation has made incredible progress, not everyone with CF, including Luci, 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.
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.
We've changed our team name to Luci because this team is hers and we work so hard to raise money for her and everyone else without modulators. Luci is our motivation to keep fundraising, we will never stop.
Thank for being here, reading, joining us on the walk and donating, we couldn't do it without you!
This August, Luci started preschool and has endured great changes to her daily schedule and routines, nonetheless, she is loving school! Every morning she’s up at 6 a.m. doing her chest treatments without skipping a beat, she is our daily motivation and reminder of strength and resilience. Aside from her treatments, medications, and routines, CF does not define Luci. She is a thriving 3-year-old full of life, love, and sassiness! She surprises us every day with her energy and enthusiasm, playing with her brother Teddy, riding her balance bike, and being an absolute natural at gymnastics.
This is our fourth year joining Great Strides. Monetary donations help the foundation continue working for modulators and a cure, joining us at the walk at the Houston Zoo on May 16 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 next May!
While the CF Foundation has made incredible progress, not everyone with CF, including Luci, 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.
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.
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