Kaylee |
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The 3rd Annual Kaylee's Course will be held on September 13, 2008
This quilt will be raffled off at race. You can buy tickets at the race or email me at marla@sweetkaylee.com . You do not have to be present to win. Kaylee is a happy little 5 year old with a rare accelerated aging disease called Progeria. Children with Progeria age 8 to 10 times faster than normal. Signs of Progeria include growth failure, loss of body fat and hair, aged-looking skin, stiffness of joints, hip dislocation, generalized atherosclerosis, cardiovascular (heart) disease and stroke. The children all have a remarkably similar appearance, despite differing ethnic background. Children with Progeria die of atherosclerosis (heart disease) at an average age of thirteen years (with a range of about 8 - 21 years) Kaylee does not let this disease stop her from doing anything. She is like any other 5 year old. She plays t-ball and soccer. She has three older brothers and has lots of friends. She will be attending her second year of preschool in the fall. She loves school and can't wait to go back. She is currently involved in a 2 1/2 year clincial trial that we hope will slow down or cure. THE FIRST-EVER CLINICAL DRUG TRIAL!
 July 20, 2006: PRF-funded researchers continue to drive Progeria research to new levels of progress in our quest for the cure. Published in today's online edition of the Journal of Clinical Investigation, the findings support the start of human clinical trials with the cancer drug, farnesyltransferase inhibitor (FTI).PRF is funding a clinical drug trial for Progeria, which began on May 7th. The trial is treating the children with a drug called FTI. This is a critical time to help PRF, as we are raising money to fund the trial.
Excerpts taken from the Journal of Clinical Investigation:
Cancer Drug Improves Progeria: New Mouse Model Closest to Disease in Humans
Using their new mouse model of progeria, UCLA Investigators found that an experimental drug, called a farnesyltransferase inhibitor, improved bone density, reduced bone fractures, delayed the onset of the disease, and helped with weight gain. The effects of the drug were more dramatic than in previous studies using other animal models. This new mouse model closely mirrors the genetic defect causing many cases of progeria in humans.
These findings will help researchers target drug therapies for children with progeria and lead to a better understanding of mechanisms of disease. The UCLA findings have made it feasible to consider human clinical trials.
UCLA researchers include Dr. Shao H. Yang, Loren G. Fong, Ph.D., and Dr. Stephen G. Young of the David Geffen School of Medicine at UCLA.
Kaylee is a bright and sweet little girl. She was diagnosed with an accelerated aging disease called Progeria when she was 12 months old. Born July 21, 2003, Kaylee was released from the hospital with a good bill of health. It wasn't until she was 5 1/2 months old that we suspected something was wrong, she was not gaining weight. We took her to many different specialists before she was finally diagnosed. At first we couldn't believe the diagnosis and felt it was unfair. However, Kaylee is such a happy little girl. It is hard to feel anything but thankful to have such a beautiful and happy child. Kaylee is always on the go and well entertained by her three older brothers. We have always had hope and faith that a treatment and/or cure for this terrible disease would be found. We are very excited that scientists have now found a drug that they believe could be an effective treatment and possible cure. Find out more about Progeria Kids or about Progeria Information. Check out Kaylee's journal and the photo gallery. Also, don't forget to sign the guest book before leaving. There will be more photos coming soon. Thanks for stopping in.
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