This was posted on Swirlydoos when posted as LO of the week-I was so touched..
"This gorgeous Layout just blew us away. More so for the meaning behind the page. Tacey's neice is fighting Cystic Fibrosis, and although she is a strong little girl, the effects the disease has on her fragile little body can be devastating. She is an angel here on earth that has many people who love her very much. Aunt Tracey is one of them. The distressing adds to the beautiful charm of this page with its soft beautiful colors. Everything on this page echoes LOVE... The angel wings fashioned from the photo corner piece is a perfect touch. It's always in the little details that emotions show through what the artist is trying to portray. We love everything about this page Tracey, and we pray that one day a miracle cure will come in Viviens lifetime... Bless little Viv"
Many of you know that my niece, Vivi, the subject of many of my LOs, has Cystic Fibrosis. Every year the Cystic Fibrosis Foundations hold the Great Strides fundraiser-a national fundaiser with walks sponsored by local groups-there is probably one near you! This is Vivi's home page-if you have a minute-please read on about how you could possible help raise funds toward research to find a cure in her lifetime-the race is on!
Welcome to the Vivers' Givers Great Strides home page!
|2012 Mendon - Southwick's Zoo||Walk Information|
|My fundraising goal:||$3,000.00|
|Money raised to date:||$200.00|
|Click to Donate:Viver's Givers !!!!|
Welcome to VIVERS' GIVERS team webpage! 2012 is our second annual
walk and we know it will be another great event! We ask for your support
and participation to reach our fundraising goal and fulfill our
mission: Help improve the quality of life for those living with Cystic
Fibrosis (CF) and those yet to be born with this genetic condition.|
**A special thank you to MIT Lincoln Laboratory Community Outreach and Health & Wellness for publicizing this event! If you are from the Laboratory and have questions, please contact Kerin Gregory (Group 81) x2028.**
MORE ABOUT OUR CF STORY AND 2012 VIVERS UPDATES~ Thank you for taking time to learn more about our motivation to support progress for therapies and a cure for CF. Our little girl, Vivien (or Vivers as we sometimes like to call her), was diagnosed with CF in November 2010 at just two weeks old. Vivien is now a year and some change . . . and let us tell you, she is full of energy and spirit! She recently learned to walk and talk and doesn't stop doing either for very long. Your support helps her directly and she thanks you for that!! Since birth, she has had only two common colds which went away quickly. Otherwise, she's been extremely healthy. Each day, she takes vitamins and pancreatic digestive enzymes to help her absorb all the good stuff in her food. This helps her track well on the growth charts and will provide her with energy which she may need to battle infection. We've also started practicing chest physical therapy to help clear any mucus from her airways. We make a game of it and thump her on the back, front and side of her ribcage with cupped hands. She is doing great and we appreciate your help in keeping her healthy!! The CF Center at Children's Hospital in Boston is helping us to provide the best care possible at this crucial early stage of life. While we cannot predict exactly what the future may hold, we can help improve her quality of life by raising funds for research.
Starting today, we can make strides to facilitate important research so that in Vivien's lifetime, she will come to know the healing power of modern medicine. Already, she will grow up knowing that she has love and support from an incredible network of loved ones. Please help us ensure that she and other kids with CF will live long and healthy lives free of the symptoms of this disease. Help us make a true impact for her and the other 30,000 CFers in the U.S. by supporting Vivers' Givers!
~EVEN MORE DETAILS ON THE DISEASE~ To give you a quick overview of CF, normally, the healthy CF gene makes a protein - known as CFTR (Cystic Fibrosis conductance Transmembrane Regulator) - that is found in cells that line various organs, like the lungs and the pancreas. When the protein is defective, the salt balance in the body is disturbed. Because there is too little salt and water on the outside of the cells, the thin layer of mucus that helps keep the lungs free of germs becomes very thick. After Vivien's birth, we learned through blood tests that she had inherited two defective genes (one very common gene mutation and one rare mutation). We cannot predict the severity of the disease at this time but she may someday experience various effects. A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
* clogs the lungs and leads to life-threatening lung infections; and
* obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
Since 1955, the Cystic Fibrosis Foundation has been the driving force behind the pursuit of a cure. Research and care supported by the CFF is making a huge difference in extending the quality of life for those with CF. We need your help now more than ever to ensure that a cure is found sooner rather than later.
Our plan is to dive in to charity events in Vivien's name...the more we do now, the more she will benefit later!
To learn more about CF and the CF Foundation, visit www.cff.org.
Jan 31, 2012: Press Release on FDA Approval of Kalydeco - First Drug to Treat Underlying Cause of CF: http://www.cff.org/aboutCFFoundation/NewsEvents/2012NewsArchive/1-31-FDA-Approves-Kalydeco.cfm
THANK YOU for taking the time to explore our webpage, read our story, and we hope you will help us keep Vivien healthy and happy as she grows up! -Kerin and Jon Gregory
*TO DONATE DIRECTLY TO JON (SAME TEAM!): please visit his personal fundraising site at: