Luci's Story
Jenny Hartwig
Jenny Hartwig
Lucille is our happy two-year-old baby girl with so much energy and life. She, as well as her brother, Theodore, are our miracle babies that we prayed for. Watching her grow and become a bossy little toddler is our dream come true!
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.
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!
There is currently no cure for cystic fibrosis and too many people with CF die young. I’m walking to help change that reality.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
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.
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!
There is currently no cure for cystic fibrosis and too many people with CF die young. I’m walking to help change that reality.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Every person born with cystic fibrosis is on a unique journey and experiences this challenging disease differently. While progress has been made, a long road lies ahead for far too many people fighting this terrible disease. We need a cure so that everyone with CF has a better chance to live a long, healthy life.
Will you help us end cystic fibrosis?
By donating to my fundraising goal, you have the power to advance the research and science needed to drive our shared dream forward – a cure for everyone with CF.
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