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 and Penelope are my grand daughters. Amelia 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 Penelope Jayne. She too was born with CF. 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 and Penelope'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 was in the mid 30's but that has been steadily improving, now in the mid 50's, because of donations to foundations like the Cystic Fibrosis Foundation. Today great strides are being taken in the search for a corrector and a cure. We are getting closer, but we still need your help!
This year Amelia and Penelope have started taking a new drug Trikafta (just approved by the FDA) that is available for children 6 years and older. Trikafta has had a PROFOUND effect on their health. Trikafta was directly funded by your donations! 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.