Monica Taillefer

Monica Marie Amanda Taillefer (NPC)
8/5/09 - 5/2/12

With broken hearts, we share the news that Monica Taillefer, the daughter of Simon Taillefer and Heather Patenaude of Quebec, Canada has passed away. "Princess Monica," as we love to call her, was two and a half years old, far surpassing all expectations. Monica passed away at home in the loving arms of her parents, at 9:34 p.m. on Wednesday, May 2nd. Remarkably, Monica was also born on a Wednesday at 9:34 p.m.

From the beginning, persisting in the face of their baby's grim diagnosis of Niemann-Pick Disease Type C, Heather and Simon resolved to make every day and every moment special. The Patenaude-Taillefer family generously shared their family's story and photos with us to help raise funds and awareness for the fight against Niemann-Pick Disease, and through the seasons, little Monica's happy face has brought smiles to so many who never had the joy of meeting her.

Our deepest sympathy to Heather and Simon, their extended family, and many friends at this very sad time.

Visit Monica's special page to see photos of her family's celebrations.

For more information about Niemann-Pick Disease, contact the National Niemann-Pick Disease Foundation (http://www.nnpdf.org/).

Princess Monica Celebrates First Birthday!

The 18th Annual National Niemann-Pick Disease Family Support and Medical Conference was held August 5th through 8th, in Toronto, Canada.

One of many highlights of the conference was the "Princess Party" held in honor of the first birthday of Monica Taillefer, daughter of Heather Patenaude-Taillefer and Simon Taillefer of Quebec.

The party was complete with a tiara for Princess Monica, crowns for all the kids, cake, of course, and special appearances by Cinderella and Snow White.

For more conference details and a link to see dozens of great photos from the event, visit the NNPDF NewsLine page.