On April 21, 2011, after months of testing, our little Carly-Q was diagnosed with Progeria. Carly is the 80th child living with Progeria in the world.
Progeria is a very rare, fatal, genetic condition, characterized by accelerated aging. Although kids with progeria are born looking healthy, by 18 months they display signs of growth failure, loss of body fat and hair, aged skin, stiffness of joints, hip dislocation, and atherosclerosis / cardiovascular disease. All children with Progeria die of the same heart disease that affects millions of normal aging adults (arteriosclerosis), but instead of occuring at 60 or 70 years of age, these children may suffer strokes and heart attacks even before age 10.
The Progeria Research Foundation [PRF] is literally in warp speed. PRF was founded in 1999 by the parents and aunt of my new hero: Sam, who has progeria and is now 14 years old. PRF has gone from infancy to gene discovery/identification in 2003 to diagnosis and now looking toward their third drug trial in 2012. These are not just any parents – both are brilliant and well established in the field of Pediatric medicine. You will not find anyone more dedicated to finding a cure as soon as possible. They are just as keenly aware as Ryan and I that time is so short. We must move quickly!
While the second drug trial is wrapping up, PRF is working to set up / finalize a third drug trial that Carly would participate in. We need your help. Your donations help to fund the drug trials where progeria kids gather from around the world to receive medicines and be evaluated. Like us, they are providing tissue samples, medical charts, information and daily measurements to PRF so that they can be the nucleus of information and keep researchers across the globe working on a cure. Additionally, we have received information and support from PRF that no doctors could possibly provide. This information was not available 5 or even 2 years ago! With science and technology today, the PRF team is utilizing every resource possible while it speeds toward a cure.
We are positive that Carly’s quality of life will be directly improved due to all the hard work being done by PRF and the research teams. We are so thankful for your support, and all of the love and positivity everyone has shown us so far. Thank you so much – and keep that positivity coming!
PLEASE forward this to anyone who you think might want to donate or spread the word for us. WE NEED A CURE!