My Great Strides Story
Hello! We are walking for our son Nathaniel. He is ten years old with Cystic Fibrosis.
2017 was filled with many ups and downs for Nathaniel. We were very excited at the start of the year because he started on Okrambi. However, despite seeing a steady weight gain, his lung function continued to decline. We made a tough decision towards the end of the year to stop using Okrambi.
But the year ended with a bang. In December, we were ecstatic to learn that Nathaniel was approved to participate in a clinical trial for a new drug. He is only 1 of 56 kids worldwide to be a part of this phase of the trial. Already Nathaniel is reporting that his stomach doesn’t hurt anymore, something that it constantly did in the past. Time will tell if this new drug is effective for him.
All of these drugs that are being tested are the direct result of your donation dollars funding research. Cystic Fibrosis is an orphan disease, meaning it does not receive any government funding. Without your donation the advances that are being made towards controlling this terrible disease would not be possible.
Nathaniel goes through a lot on a daily basis. He spends a minimum of 2 hours each day doing breathing treatments. He wakes up early to do his first treatment so he can catch the school bus on time. It’s also the last thing he does before going to bed. When ill, he spends a minimum of 4 hours doing breathing treatments each day.
Nathaniel's body cannot break down fats or proteins, so he takes 25-30 pills daily to digest his food, so it can be absorbed. NATHANIEL NEEDS A CURE! No child should have to go through what he does on a daily basis!!
Nathaniel just wants to be a "normal" kid that can play, eat without medicine, and NO more breathing treatments. He deserve to breathe just like you and me!
There are approximately 30,000 Americans living with cystic fibrosis. They are moms, dads, sisters, brothers, daughters, sons, friends and co-workers who struggle every day just to breathe. I walk for them and hope you will support me in my efforts.
Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease, but there are drugs on the horizon to control it. Ninety cent of every dollar donated funds research towards finding a cure.
By walking today, we are helping add tomorrows to the lives of people living with cystic fibrosis. Will you join us? Support Nathaniel by making a donation to our Great Strides fund-raising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families. Watch Nathaniel's YouTube video visit https://youtu.be/ClrXcxgW_mE