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For those of you guys that don't know. Both of my daughters have Cystic Fibrosis. This year i handed over the amelia's angels ride to Katelyn. She's a young woman who's also fighting CF.
CF is a nasty disease and there's no cure yet. But we are getting so close. They're even calling it the Polio of our generation! Many doctors believe we will see a cure in our lifetime. Which is amazing since both my kids are in a race against time. The average life expectancy of someone born TODAY is 34. Keep in mind that's a bell curve. 1/4 of those people never even make it to their 18th birthday.
CF affects your entire body, but specifically your lungs and pancreas. The lungs end up coated in a sticky mucus and dirt/dust/bacteria become trapped inside the lungs and damage them. Ultimately leading to the lungs failing. The pancreas can't get enzymes to the stomach to digest food so people with CF have to take enzymes. In addition to 7 or more pills every time they eat anything, they do nebulized breathing treatments, along with physio therapy to clearance their airways. For amelia that means hitting her back for 30 mins 2-4 times a day. She also has a "vest" that she wears that hooks up to a machine and basically tries to shake the mucus loose.
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My kids: Amelia and Penelope. Penelope is 5 weeks old and has yet to make it home. I'm hoping sometime in july.
Her belly tube is out of her mouth now but she has a stoma and a bag until they reconnect her bowel.
The beads are her "beads of courage". every time she has a procedure done or hits a milestone she gets a beat representing that... she has a LOT of beads and she's only 5 weeks old.