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Naperville 2017

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Raised: $15,751.00

Goal: $11,111.00

My Great Strides Story

  • Nathaniel started Orkambi on October 13, 2016
  • PFT at the hospital
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Hello! We are walking for Nathaniel! Nathaniel is 9 years old with Cystic Fibrosis.
2016 was filled with many ups and downs for Nathaniel. We are very excited that he was able to start on the new drug Okrambi, which has shown very promising results in controlling the deficiencies that CF causes in many patients. The development of this drug is directly the result of your donation dollars that funded it. Nathaniel has already gained over 5 pounds in the three months that he has been on the drug, bumping his BMI to over 30% (the highest it has ever been!).

However, his lung function has recently declined. We are not yet sure if this merely a momentary setback or if it is an indication of a bigger problem. Nathaniel’s doctors are closely monitoring this and we are praying that his lungs return to normal levels.
 
The doctors like for the CF patients to have their BMI at 50-75%, research has shown that having a higher BMI will help keep them healthier.
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 at least 4 hours doing breathing treatments.
 
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 fundraising campaign today!
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.


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