Jenny Wipprecht
Kaylee’s Cystic Fibrosis Story
Hi Friend’s,
It is once again that time of year when I ask for your help to put an end to Cystic Fibrosis (CF) and bring lifesaving treatments to my wonderful, hardworking, good hearted neice, Kaylee and the 30,000 others in the US alone who suffer from this fatal and merciless disease.
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.
On September 17th, Team Kaylee May will be once again climbing T-Mobile multiple times to raise money to find the cure for CF.
Kaylee will be 29 on August 27th and I put together a timeline of Kaylee’s life since she was born to highlight some of what she has gone through and the remarkable progress the Cystic Fibrosis Foundation has made in treating and extending the lives of those with CF.
Aug 27, 1996:
Kaylee was born a seemingly healthy, full-term infant.
Within 10 days, we received the devastating news that she had biliary atresia, a rare liver disease, and needed emergent surgery to buy her time until she could get a liver transplant. There was no mention of Cystic Fibrosis…yet.
Sept 1996:
Nov. 1996-March 1997:
From a liver perspective, doing much better than expected, but Kaylee is emaciated and coughing continuously. Mom notices skin is salty and requested to have test for Cystic Fibrosis based on all of these symptoms. Test for Cystic Fibrosis is positive and at the age of 10 months, life is again forever changed. Cystic Fibrosis was also responsible for the liver disease that she initially presented with; the only good news was that liver transplant may be less likely, but a whole new set of concerns arise with this new diagnosis.
April 1997-2007:
Coming to terms with diagnosis of CF and there only being a 50% chance that Kaylee will live to the age of 25, which was the mean age of survival for CF patients in 1997.
Steady decline in lung function despite frequent lengthy hospitalizations to treat life threatening lung infections and frequent bowel obstructions (another terrible complication of CF).
Thank-you so much for taking the time to read our story. Any donation large or small is appreciated beyond what words can describe. If you would like to donate, please click the donate button.
Thank-you from the bottom of my heart,
Jenny
Hi Friend’s,
It is once again that time of year when I ask for your help to put an end to Cystic Fibrosis (CF) and bring lifesaving treatments to my wonderful, hardworking, good hearted neice, Kaylee and the 30,000 others in the US alone who suffer from this fatal and merciless disease.
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.
On September 17th, Team Kaylee May will be once again climbing T-Mobile multiple times to raise money to find the cure for CF.
Kaylee will be 29 on August 27th and I put together a timeline of Kaylee’s life since she was born to highlight some of what she has gone through and the remarkable progress the Cystic Fibrosis Foundation has made in treating and extending the lives of those with CF.
Aug 27, 1996:
Kaylee was born a seemingly healthy, full-term infant.
Within 10 days, we received the devastating news that she had biliary atresia, a rare liver disease, and needed emergent surgery to buy her time until she could get a liver transplant. There was no mention of Cystic Fibrosis…yet.
Sept 1996:
- Traveled from Seattle to Philadelphia for liver surgery (Kasai procedure).
- 2 weeks later, returned to Seattle and had another major abdominal surgery due to surgical complications and admitted for over 30 days.
Nov. 1996-March 1997:
From a liver perspective, doing much better than expected, but Kaylee is emaciated and coughing continuously. Mom notices skin is salty and requested to have test for Cystic Fibrosis based on all of these symptoms. Test for Cystic Fibrosis is positive and at the age of 10 months, life is again forever changed. Cystic Fibrosis was also responsible for the liver disease that she initially presented with; the only good news was that liver transplant may be less likely, but a whole new set of concerns arise with this new diagnosis.
April 1997-2007:
Coming to terms with diagnosis of CF and there only being a 50% chance that Kaylee will live to the age of 25, which was the mean age of survival for CF patients in 1997.
- Started multiple treatments to treat CF symptoms (pancreatic enzymes with every bottle, time consuming breathing treatments and chest PT 2-3 times daily, approximately a dozen medications daily, feeding tube in stomach to allow for delivery of calorie rich formula and multiple doctors appts with lung and GI specialists).
- Intense home medical regimen allowed for a fairly normal early childhood; no hospital admits during this period.
Steady decline in lung function despite frequent lengthy hospitalizations to treat life threatening lung infections and frequent bowel obstructions (another terrible complication of CF).
- Kaylee still manages to graduate from high school with excellent grades and attends Boise State University in the fall of 2014!
- Forced to leave beloved Boise State due to rapid decline in health and returns to Seattle to focus on health.
- Attends and graduates from Code Fellows, an intense computer coding program and begins successful career as a software developer.
- Living with only 30-40% of normal lung capacity, which is physically exhausting due to lack of oxygen, continues to endure frequent hospitalizations.
- Lung transplant discussions begin and Kaylee is worked up at 2 different lung transplant centers while fighting to breath, coughing constantly and weighing only 90 pounds, despite tube feeding supplementation and eating over 5,000 calories/day.
- A NEW BEGINNING! New long awaited medication (Trikafta) to treat CF at the cellular level using CFTR modulators is FDA approved and Kaylee starts taking it about one week before Thanksgiving. Within 2 hours of taking first dose, it is OBVIOUS that it is working and by Thanksgiving, coughing has stopped, she can take a deep breath for the first time in many years and there is no doubt that Trikafta is the answer to many prayers. It was a very special Thanksgiving.
- Lung function measurements have gone from the low 30’s to 53%, which is no longer in lung transplant territory and frequent hospitalizations stop!
- Important to remember Trikafta is NOT a cure and 10% of the CF population does not benefit from it due to more rare CF mutations. More work to be done.
- In Feb 2020, Kaylee meets Beau, the love of her life and they make many memories traveling and living life to the fullest doing things that would not have been possible pre-Trikafta.
- Unfortunately, Kaylee and many others in the CF community taking Trikafta are noticing a slow return of symptoms (coughing more and lung functions trending downwards), almost as though there is a tolerance to the medication. However, still doing much better than pre-Trikafta days.
- Kaylee and Beau get engaged Feb 1, 2025!
- June 2025, Kaylee announces that she feels a calling to become a nurse and enrolls in nursing school; there is no doubt her work ethic and compassion will make her an excellent RN!
- A new medication similar to Trikafta called Alyftrek has been FDA approved and Kaylee started it June 2025 (in place of Trikafta); we are praying it will keep her stable until gene therapy is further along.
- Gene therapies are more challenging and require substantial investment, while the cost of research only continues to rise. But there’s no greater cost than the loss of dreams and lives or far too many people
Thank-you so much for taking the time to read our story. Any donation large or small is appreciated beyond what words can describe. If you would like to donate, please click the donate button.
Thank-you from the bottom of my heart,
Jenny
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