Kansas City Great Strides Walk: Date: May 10, 2025 Check In: 9:00 AM Start Walk: 10:30 AM Distance: 1.5 mile Location: Crown Center Square, 2425 Grand Blvd., Kansas City, MO 64108
Determined for Delilah
Determined For Delilah
Determined for Delilah
2024 was the greatest year we could have ever imagined! We got to welcome our perfect, sweet and beautiful little Delilah into the world! When she flashes her dimpled smile, we fall more and more in love! This first year of life, Delilah has given us a fair share of surprises; she was born with a congenital heart defect (with which we got the 'all clear' in October), had an extended NICU stay, and just when we thought we were on stable ground, she was diagnosed with Cystic Fibrosis at 1 month old.
When we heard the initial CF diagnosis, we were shocked. We have no known family history and weren't quite sure what CF was. As anyone would do, we resorted to Google. This only heightened our fears and we began to worry what Delilah's future would look like.
Meeting with the Cystic Fibrosis team at Children's Mercy eased our worries, answered our questions, and gave us a positive outlook on Cystic Fibrosis. The research on CF in the last 10 years has been amazing! There are new medicines and treatments to keep kids like Delilah growing and thriving! Yes, Delilah's day to day life looks a little different than some, but she gets to be a kid just like everyone else. One member of her team said something that will always stick with us: "The life you had originally envisioned for Delilah will be the life she lives." This is something that we will continue to hold close to our hearts.
Though lots of advancements have been made in the last few years for kiddos like Delilah, there is still no cure for Cystic Fibrosis. We are determined to keep Delilah happy and healthy and continue to fundraise and raise awareness so all who are living with CF can one day have a cure!
When we heard the initial CF diagnosis, we were shocked. We have no known family history and weren't quite sure what CF was. As anyone would do, we resorted to Google. This only heightened our fears and we began to worry what Delilah's future would look like.
Meeting with the Cystic Fibrosis team at Children's Mercy eased our worries, answered our questions, and gave us a positive outlook on Cystic Fibrosis. The research on CF in the last 10 years has been amazing! There are new medicines and treatments to keep kids like Delilah growing and thriving! Yes, Delilah's day to day life looks a little different than some, but she gets to be a kid just like everyone else. One member of her team said something that will always stick with us: "The life you had originally envisioned for Delilah will be the life she lives." This is something that we will continue to hold close to our hearts.
Though lots of advancements have been made in the last few years for kiddos like Delilah, there is still no cure for Cystic Fibrosis. We are determined to keep Delilah happy and healthy and continue to fundraise and raise awareness so all who are living with CF can one day have a cure!
JAN
8
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