Celebrating Every Moment
Treasure every moment, every giggle, every cuddle, every kiss,
and make memories you will hold forever close in your heart.
Monica Marie Amanda Taillefer
August 5, 2009 – May 2, 2012
With broken hearts, we pass along word that Monica has passed away, at home in the loving arms of her parents, Heather and Simon. “Princess Monica,” as we love to call her, was two and a half years old, far surpassing all expectations. Monica was born on a Wednesday at 9:34 p.m., and passed away 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 little Monica’s happy face through the seasons has brought smiles to so many who never had the joy of meeting her.
Princess Monica’s Celebration of Life will be held Saturday, May 12, at 9:00 a.m., at Saint-Joseph’s Church, 16 York Street, Huntingdon, Quebec. In lieu of flowers, the family invites donations of teddy bears, which will be donated to the Shawinigan Hospital where Monica went weekly for care. The bears will be distributed to newborns or sick children with a message attached, “You have an angel princess named Monica watching over you.” More details about the Celebration of Life
The family asks that any messages be directed to their personal email account.
Our deepest sympathy to Heather and Simon, their extended family, and many friends at this very sad time.
Little Monica Taillefer, daughter of Simon and Heather (Patenaude) Taillefer of Canada, was diagnosed with Niemann-Pick Disease Type C when she was just two months old.
Due to how severely affected her liver was, her parents were told that Monica was not expected to live more than a few months. Surely, she would not even see her first birthday.
However, little Monica, with the heart of a “tiny but mighty” fighter, nourished by the love and encouragement of her upbeat parents, is still with us at 14 months of age, smiling, babbling, playing “Princess” dress-up, going for stroller rides, and being a Cookie Monster.
The Taillefers recognize each new day as a gift, and celebrate their baby’s birthday every month, complete with cakes made by mom, Heather. When you know your time with your child is limited, you worry less about spoiling her and more about lavishing her with all the love and attention she can hold.
Heather and Simon graciously agreed to share their story with us, and it serves as inspiration to us all to find and celebrate the joy in each and every day. The Taillefer’s positive outlook is featured in the NNPDF’s 2010 Fall Appeal — you can read the full story here.
Here are some photos of the Taillefer family as they strive to live each day to the fullest, appreciating the time they are given with “Princess Monica.”