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 16 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. 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 while 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. (As of today she does not need supplemental milks at all, Praise God!) 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 her lifetime). 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 virtual walk. She would love to know that you support her. We thank you all foe your participation, however that may be.
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. Great Strides is a fun, family-friendly event that raises awareness and support for people with CF and their families.
Real progress has been for those who have CF, but there is still no cure for this devastating disease and many lives are cut far too short. By walking today, I am helping add tomorrows to the lives of people living with cystic fibrosis. Will you join me? Please consider making a donation to my Great Strides fundraising campaign today!
Please support me!
Help me reach my fundraising goal by donating to my Great Strides fundraising campaign. Your gift will help add tomorrows to the lives of people with cystic fibrosis by supporting groundbreaking research and medical progress. Your gift is 100-percent tax deductible.