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I am a mother of a Cystic Fibrosis warrior. My name is Jill Arp and I have the bravest and strongest fighter I have ever known. And she is only 12 years old. My daughter, Jennica, was in the NICU shortly after birth. We had 2 weeks of testing before she was diagnosed with Cystic Fibrosis. Jennica has some rare mutations, also termed nonsense mutations, that are not treatable with the new break through CF drugs. She has fought through some pretty intense mycobacteria infections that require multiple antibiotic treatments and take years to overcome. She suffers from allergic reactions to fungus in the air that put her on long term steroids and recently allergy injections. Her lung function has been in the 60-70% range for so long that we didn’t know if she would ever get back to 100%. She has been hospitalized with CF exacerbations, bowel obstructions, sinus surgeries, and has had countless bronchoscopies. She has no new breakthrough drugs to help with her disease. I am the mother of a fighter.
