Sharing what my Mom wrote about Gwen:
Our dear granddaughter, Gwen, is 5 years old. Active and a beautiful soul inside and out.
She loves dance classes, swimming, going to preschool, playing, friends , family, cats, so many things. She is an incredibly funny person with a great sense of humor. A joy to be with.
This past year was rough with one after another after another “virus” needing antibiotics for bad coughs.
While classmates and others would get over a cold or other virus fairly easily, hers would linger for weeks. That’s the difference with having Cystic Fibrosis. The thick mucus in her body makes an easy breeding ground for bacterias to take over. She’s missed days of school, dance classes and fun things. Sometimes because some other people decide
to come to school or other things when they really were sick. ( keep your illnesses at home, you never know how severely you are impacting others)
Praying that each virus with nasty cough isn’t damaging her young lungs.
Each illness she was put on antibiotics in the hopes of protecting her lungs. CF is so different. Nothing like I’m used to at all, or rules you’ve learned with illnesses over the years. She has 1/2 hr vest and aerosol treatments twice daily at a minimum, which she often hates. More often when she’s sick. Enzymes before eating most foods so her body can digest and use the nutrients. Cf clinic visits. Lots of stress and worry for her parents. Huge amount of daily things to keep her as healthy as possible, all while being an active 5 year old.
That’s why research is needed. A cure is needed. Starting at 6 she’ll most likely start on Trikafta. (Hopes it’ll be approved for younger soon). It can be wonderful for some and for others filled with major side effects. We’re praying it will be good for her and hoping other treatments are coming forward.
Life with CF is no joke.
No sympathy needed please. Just raising awareness of what Cystic Fibrosis really is like.
Prayers for a cure
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