Our Great Strides Story
Kristen Henry
Fundraising for West Suburban Great Strides
Kristen Henry
Our five-year-old daughter Joanna is bright, funny, creative and loves all animals– real, extinct and imaginary. 🐶🦕🐉 She loves going to preschool to learn about letters, make crafts and play with her friends. She is precocious and charms everyone she meets. She's like any other kid, with an invisible difference: when she was a baby, her newborn screening came back positive for cystic fibrosis and our world was forever changed.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs over time. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Joanna is a fighter, although she hardly knows it. To her it is normal to swallow more than 20 pills throughout the day, sit for 30-minute breathing treatments twice daily (more when she's sick), see multiple doctors every few months and participate in more of her care as she grows-- she has learned to pay attention to her symptoms and is starting to remember medications and treatments on her own.
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.
There are some amazing drugs for CF called modulators that have helped many, but unfortunately because of side effects Joanna is not able to use these drugs. We are blessed that our girl is relatively healthy with few signs of disease progression, but we need better treatments, and a CURE so that everyone with CF has a better chance to live a long, healthy life. Life expectancy continues to increase for children born with CF in the past five years, but as parents, 50 or 60 years is not enough.
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.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs over time. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
Joanna is a fighter, although she hardly knows it. To her it is normal to swallow more than 20 pills throughout the day, sit for 30-minute breathing treatments twice daily (more when she's sick), see multiple doctors every few months and participate in more of her care as she grows-- she has learned to pay attention to her symptoms and is starting to remember medications and treatments on her own.
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.
There are some amazing drugs for CF called modulators that have helped many, but unfortunately because of side effects Joanna is not able to use these drugs. We are blessed that our girl is relatively healthy with few signs of disease progression, but we need better treatments, and a CURE so that everyone with CF has a better chance to live a long, healthy life. Life expectancy continues to increase for children born with CF in the past five years, but as parents, 50 or 60 years is not enough.
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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