Happy Halloween to all! I know many parents are trying to make sure everything is perfect for their children’s big night out ! We are doing the same and trying to enjoy every last detail !
But today, I also want to wish a special Happy Halloween to a little boy named Ben (he’s the monkey to the right)! I want to share with you his story and why it is such a special day.
Here’s the story as told by his family’s friend, Kare:
“My dearest friend Kim and her husband Dave gave birth to their first little boy, Ben on Sept 19th, 2007. At 3 days old a nurse practitioner suspected that he might have a rare genetic disorder named Menkes Disease. On Halloween, 2007, it was confirmed by Doctors at NIH that baby Ben did in fact have Menkes and he was immediately put on an experimental treatment to prevent the horrible effects of this disorder. Most Menkes children are only diagnosed after the seizures begin at around 3-6 months. Ben was lucky to have been dignosed early, but he was still only given about a 66% chance of making it to his 2nd birthday. Read More…
Posted under Charities, Random Thoughts
This post was written by Lena on October 31, 2008







