Lauren's Great Strides Story
Hope Sielicki
Hope Sielicki
Can you believe it? Another year has passed, and thanks to you, in 13 years we have raised well over $100,000 towards finding a cure for Lauren and others with cystic fibrosis-just through Great Strides. Thank you so much for your support!
Lauren will be turning 13-years-old in July. She is in the seventh grade at Wren Middle School. She is an excellent student, but an even better soccer player. This is Lauren's 4th year playing travel soccer with the Easley Soccer Club and has recently made the Wren High School JV soccer team as a starter! Lauren’s dream is still to become a professional soccer player.
We have been very lucky that Lauren has continued to be healthy. We are still doing everything we can to preserve her lungs until a cure is found. To keep her healthy, Lauren continues to take about 30 pills/day. She takes enzymes every time she eats, so she can absorb the fats and nutrients from the food. She does chest physiotherapy with her vest. She does 1 inhaler breathing treatment in the mornings and 2 before bed. She takes an acid reducer twice a day to help the enzymes work better. She takes an anti-inflammatory 3 times a week to help reduce inflammation in her lungs. She also has special vitamins she takes because people with CF have a hard time maintaining healthy levels of fat soluble vitamins. Perhaps the most important medication she takes is called Trikafta. Trikafta works to treat the underlying cause of CF. All these meds just to maintain her health. When she's sick, it gets a bit more complicated! She's an incredible kid-we've been so lucky. She takes all of her medications without complaining (for the most part) and she has always been compliant with shakey-shakey (vest) and breathers (nebulized meds).
Back in December, a new medicine called Alyftrek was approved by the FDA for Lauren’s type of CF. This medicine will replace Trikafta. Trikafta has already been a game changer in Lauren’s life. She has been able to gain weight and keep it on, (which is a big deal with how much she is training with soccer). Her lung function is very good and has been maintained for a while now, and if she becomes sick, she is able to recover more normally. Perhaps the biggest evidence of Trikafta working is Lauren’s repeat sweat test (gold standard for cystic fibrosis testing) results. When we had this test repeated last year, her values were in the normal range while taking the Trikafta (which tells us the Trikafta is working treating the underlying cause of CF)!! It’s hard to imagine something better than this (besides a cure), but hopefully this new medicine is even better! This medication is once a day (you wouldn’t really think 1 pill would make a difference, but believe me, it does). Along with Lauren’s medical team, we’re weighing beginning Alyftrek in the near future!
There are so many drugs/treatments in the pipeline ( perhaps even a cure)-it's just a matter of money and time. Money buys science and science buys lives-it's as simple as that. Again this year, I'm participating in my local Great Strides walk and I need your help to help find Lauren's cure. Your generous gift will support the Foundation’s mission to find a cure and improve the lives of people with CF. Plus, your gift is 100 percent tax deductible.
Donating is easy and secure. Simply visit my personal page and follow the prompts to make a donation. Any amount that you can contribute is greatly appreciated. Your support will help fuel lifesaving research and care for people with CF.
We'd also love if you'd join us at this year's walk. The Greenville, SC Great Strides will be held at Greer City Park at 9 am on Saturday, May 3, 2025. You can register to walk on my page as well. Lauren loves to see her "team" at her walk.
To learn more about this devastating disease and the impact of the CF Foundation, please visit www.cff.org.
Thank you for supporting our family and our Great Strides team! Together we have and can make a difference and add tomorrows to the lives of Lauren and others with cystic fibrosis.
Sincerely,
The Sielickis
Lauren will be turning 13-years-old in July. She is in the seventh grade at Wren Middle School. She is an excellent student, but an even better soccer player. This is Lauren's 4th year playing travel soccer with the Easley Soccer Club and has recently made the Wren High School JV soccer team as a starter! Lauren’s dream is still to become a professional soccer player.
We have been very lucky that Lauren has continued to be healthy. We are still doing everything we can to preserve her lungs until a cure is found. To keep her healthy, Lauren continues to take about 30 pills/day. She takes enzymes every time she eats, so she can absorb the fats and nutrients from the food. She does chest physiotherapy with her vest. She does 1 inhaler breathing treatment in the mornings and 2 before bed. She takes an acid reducer twice a day to help the enzymes work better. She takes an anti-inflammatory 3 times a week to help reduce inflammation in her lungs. She also has special vitamins she takes because people with CF have a hard time maintaining healthy levels of fat soluble vitamins. Perhaps the most important medication she takes is called Trikafta. Trikafta works to treat the underlying cause of CF. All these meds just to maintain her health. When she's sick, it gets a bit more complicated! She's an incredible kid-we've been so lucky. She takes all of her medications without complaining (for the most part) and she has always been compliant with shakey-shakey (vest) and breathers (nebulized meds).
Back in December, a new medicine called Alyftrek was approved by the FDA for Lauren’s type of CF. This medicine will replace Trikafta. Trikafta has already been a game changer in Lauren’s life. She has been able to gain weight and keep it on, (which is a big deal with how much she is training with soccer). Her lung function is very good and has been maintained for a while now, and if she becomes sick, she is able to recover more normally. Perhaps the biggest evidence of Trikafta working is Lauren’s repeat sweat test (gold standard for cystic fibrosis testing) results. When we had this test repeated last year, her values were in the normal range while taking the Trikafta (which tells us the Trikafta is working treating the underlying cause of CF)!! It’s hard to imagine something better than this (besides a cure), but hopefully this new medicine is even better! This medication is once a day (you wouldn’t really think 1 pill would make a difference, but believe me, it does). Along with Lauren’s medical team, we’re weighing beginning Alyftrek in the near future!
There are so many drugs/treatments in the pipeline ( perhaps even a cure)-it's just a matter of money and time. Money buys science and science buys lives-it's as simple as that. Again this year, I'm participating in my local Great Strides walk and I need your help to help find Lauren's cure. Your generous gift will support the Foundation’s mission to find a cure and improve the lives of people with CF. Plus, your gift is 100 percent tax deductible.
Donating is easy and secure. Simply visit my personal page and follow the prompts to make a donation. Any amount that you can contribute is greatly appreciated. Your support will help fuel lifesaving research and care for people with CF.
We'd also love if you'd join us at this year's walk. The Greenville, SC Great Strides will be held at Greer City Park at 9 am on Saturday, May 3, 2025. You can register to walk on my page as well. Lauren loves to see her "team" at her walk.
To learn more about this devastating disease and the impact of the CF Foundation, please visit www.cff.org.
Thank you for supporting our family and our Great Strides team! Together we have and can make a difference and add tomorrows to the lives of Lauren and others with cystic fibrosis.
Sincerely,
The Sielickis
Comments