Hello all, I hope you are all well, and your all getting ready for Christmas! It was really exciting to participate in the November contest making a 'What is Paypal' video, and I'm anxiously awaiting the results to see if I won! While I'm waiting, I would like to join in to this months contest! Below you will find the link for the foundation I would be thoroughly pleased to have $250 donated to in my name! http://www.criglernajjar.com/Giving_to_the_CNA/giving_to_the_cna.htm The funds donated to this foundation help a VERY small community of families with children who have a VERY RARE liver disorder known as Crigler Najjar Syndrome. The reason this foundation is so near and dear to me is because my beautiful, amazing 8 year old daughter Brianna makes us proud members of that very small community of families, as she is one of less then 300 people in the entire world that has this rare disorder; actually, according to doctors when Brianna was diagnosed at the Children's Hospital of Philadelphia when she was born in 2003, at the time, she was only the 52nd person in the U.S. to ever have the condition! A simple Google search can show much information on the disorder, but in short, children with Crigler Najjar syndrome are born without the enzyme in their liver which is needed to break down billiruben in your system, which as a result makes their skin, and whites of their eyes always jaundice (yellow). Because this condition is so rare, there is no known cure for it aside from a liver transplant, and the only thing that allows these beautiful children to survive is to take a high, daily dose of a medication called Phenobarbital (for some kids this doesn't even work), and to sleep every night under large, bright, blue phototherapy lights, with a blindfold on, and being able to wear nothing more then undies (even in the winter). While there are small newborn sized phototherapy units in hospitals, there are no commercially offered larger phototherapy units for the children once they begin to grow, so thankfully there are some very handy folks who have figured out ways to make their own units, or convert existing products into a working medical necessity; below is a photo of Brianna sleeping in her bed under her 4 ft. phototherapy lights, which she does for approx. 10 hours every night. This particular unit used to be a tanning bed, which was re-wired, and equipped with the special blue phototherapy lights, and was graciously donated to us by a family who has a son that used to have CNS, but no longer needed it because he received a liver transplant. There are many families out there who could use help paying the excessive electric and medical bills, buying the very expensive special lights needed for the units, and of course we are all constantly hoping for a cure, which of course requires research, which in turn requires research funds! I would feel greatly honored to be able to have Paypal make a $250 donation in my name to this foundation, and I know it would put a smile on many of what we like to call "God's Golden Children". Thank you for taking the time to read this, and please consider me as one of the 25 winners!
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