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.

Halloween was always both of his parent’s favorite holiday and their passion for things like holidays and being creative with friends and family around holidays was one of the things that brought them together. It was doubly sad that their favorite day of the year had quickly become the worst day of their lives. The family went on to find out that Kim is a carrier of this disease and has had to place plans of future children on hold until they decide how to handle the situation.

All the while, Ben received two shots per day, and his parents were living on eggshells in fear of a seizure marking that the treatments weren’t working. Yet, Ben kept plugging along and making some milestones on time, and others a bit later. At their one year checkup at NIH, the doctors were amazed at his progress and gave them the closest thing to a “clean bill of health” that they could. He went to only one shot per day and is continuing to grow and accomplish new things. He (and of course, his parents) are champs and all of us who know them are amazed at the grace with which they have handled all of this. He went from being the only child in Maryland with this disease to a survivor of the disease (not that he is completely out of the woods) and a little boy who will probably walk by next Halloween at age 2.

Check out their story here. His mom did a fabulous job with his “baby journals”. I wrote to you to hopefully draw attention to disorders like this that most doctors barely even know about and to hopefully bring a little light to it. You can also learn more about kids like Ben here.  

As you can see from his Halloween picture from this year, he is a monkey and just the cutest, bravest thing you could ever see! Last year we didn’t know if he would even make it to now, and here he is getting ready to trick-or-treat for the first time!” 

HAPPY HALLOWEEN, BEN !!!

Posted under Charities, Random Thoughts