As most of you know my little sister, Journee, has cystic fibrosis and before she was a year old they told us not to expect her to make it to 1, then 2 and here we are 13 years later with a strong, proving every Dr wrong, beautiful young lady. By the grace of God it has not affected her lungs to any great extent so far, but does affect her in many other ways. She takes 5 breathing treatments a day to prevent lung infections. She has to take Creon every time she eats something so it does not cause severe stomach pain and run straight through her. Her hair is very thin and does not grow much at all, the list goes on and so does her medications. One medicine she began taking a little over a year ago has changed her life considerably. Her hair has started to thicken and grow, and for a self conscious teen girl this is huge. She has now begun maintaining and gaining weight to the point they have pulled her back on her supplemental milks with hopes of eliminating them all together. This new medicine is supposed to repair her damaged dna (the cf gene) continually and maintain her current health. After watching her I have to say it is doing better than expected and the drs are absolutely amazed at her progress. With out special funding these medications would not be available to her and are currently extremely expensive. Her medications are in the thousands and this new one is even higher. (Thank God she has insurance!). Ok so here goes, I tell you all this because we are going to participate in the Great Strides walk on her behalf this year to raise money for continued trials on medications to hopefully one day fully repair the CF gene(her Dr is very optimistic this can and may happen in my sisters lifetime, which due to medicine has now been extended into possibly her 60s). I will be posting details soon. If you find it in your heart I ask that you please pray for her continued good health and then if you can make a donation on her behalf and join us in this walk. She would love to see you there to support her and if you do not know her she would love to meet you.
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. We walk for them. Will you join us? To become a member of our team, just click on the "Join our Team" button. From there you can make a donation and start your fundraising.
By becoming a member and making a donation, you are joining a growing group of people committed to finding a cure for cystic fibrosis. Together, we are adding tomorrows to the lives of people living with CF by supporting the search for a cure.
Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.