As many of you know, or may not know, my niece, Emmy, is one of the many kids out there with cystic fibrosis. Cystic Fibrosis is a hereditary illness that affects the lungs and digestive system. People with CF produce thicker mucus that clogs the lungs and the pancreas making it hard for people to breath and digest certain nutrients. This can be life-threatening and people with CF can have a shorter life span than normal people. Currently, there is no cure for CF. There are over 1,700 mutations of CF and the test that newborns get only test for 23 of the most common mutations of CF. My niece’s gene mutation is R 347H and N 1303K. These mutations are not part of the common testing given at birth. We had only found out about her having the probability of getting CF when my sister was getting screening done prior to pregnancy. If not for these test, we would not have known about her CF and would not have be able to start preventative therapies.
Ever since Emmy was two months old, routine chest physical therapy was a part of her life, as well as albuterol treatments and increased salt intake. Fortunately, Emmy does not have the GI component and will hopefully not have as many hospitalizations as some of the kids who have a far worse case of CF. However, since she has a rare mutation, there is not a lot of research regarding her mutations as well as many others.
So I decided to raise awareness to help find a cure for the millions of kids and adults living with CF. My goal is not big, but every cent counts when it comes to funding research. My friends and I decided to run the Broad Street Run in Philadelphia on May 5, 2019 as a personal goal but also to raise awareness about CF. There are many kids with CF who may never get the chance to run a race like this. Many people with CF spend most of their lives in and out of hospitals racking up medical expenses. All proceeds will go to the Cystic Fibrosis Foundation in order to fund research and improve the lives of millions. If we could reach this goal, it’s a step in the right direction to better someone else’s life.
Thank you for taking the time to hear our story.
For more information about CF and the Cystic Fibrosis Foundation, please check out their website at https://www.cff.org
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