Welcome to my Page
Thank you for visiting my page and Thank you to anyone who has previously donated. Anyone is welcome to join in with a donation this year.
Amelia is my grand daughter. She was diagnosed with Cystic Fibrosis (often refered to as CF) at 6 days old. Since then she's fought every day to stay healthy. She's funny, smart, and likes to make "Pop Pop" (me) play with her while she does her Physio Therapy (lung clearing). In May of 2015, we welcomed another granddaughter who also has CF. Her name is Penelope Jayne. She spent the first 74 days of her life in the hospital with a stoma (her bowel was cut and a bag was added) because when she was born she had a blockage in her bowel due to CF. She's a spunky, crazy, fearless little girl with a big toothy grin!
Cystic Fibrosis is a Genetic disorder that affects Amelia's lungs and digestive system. It creats a sticky mucus in the lungs which leads to scarring and eventually failure of the lungs. In addition roughly 1/3 of people with CF develop CF related Diabetes. CF also prevents natural enzymes from reaching the stomach, leading to failure to thrive issues and difficulty maintainting a healthy weight. Average life expectancy is in the mid 30's but that has been steadily improving because of donations to foundations like the Cystic Fibrosis Foundation. Children born in the 1980's with CF were not expected to reach school age! Today great strides are being taken in the search for a corrector and a cure. We are so very close, but we still need your help!
Since last year Amelia has started taking a drug that is approved for children 12 years and older. She is in a study to expand that drug for kids her age. This drug has had a PROFOUND effect on her health. She's been significanly healthier since she started taking it. That drug (which we can't name due to NDA's) was directly funded by donations by you! The CFF uses 90 cents of every dollar for research!
My team is trying to raise $25,000.00 for the cystic fibrosis foundation. Please consider donating and helping Amelia and Penelope add to there tomorrows.