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Celebrating Every Moment

Treasure every moment, every giggle, every cuddle, every kiss, and make memories you will hold forever close in your heart.

Monica Taillefer and pumpkins 2011

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. 

Taillefer Family

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."

Monica at 3 months birthday party

Monica on her 4 month birthday

Monica's family celebrated her 3-month-birthday in November of 2009, shortly after receiving her diagnosis of Niemann-Pick Disease Type C. December 5, 2009, and another family celebration for Monica's 4-month birthday.
Monica and Heather at the 5 month birthday

Six month old birthday party

January 2010 and the 5-month-old birthday party. The 6-month milestone celebration, complete with cake with a Princess crown.
Monica at her seventh month birthday Eight months and a castle birthday cake
Cupcakes marked Monica's 7-month birthday. Heather created a castle cake fit for a princess for Monica's 8-month birthday.
Nine month birthday Monica and Simon Monica and Heather 10 month birthday with pony cake
Daddy Simon shows Monica her Barbie doll birthday cake on her 9-month birthday. A pretty pony cake marked the celebration of
Monica's 10-month birthday.
Monica Taillefer Simon Taillefer and Baby Monica
The sweet smile that steals everyone's hearts. Simon and Monica with the cute little chick cake mom Heather made for her daughter's 11-month birthday.
Monica on her first birthday Monica and parents and friends on her first birthday
A sleepy little party girl on her first birthday. Monica's first birthday - August 2010.
Birthday Cake Birthday Cake
the Taillefer family at the NNPDF 2010 Family Conference Monica flies high at Disney
Monica's first birthday was celebrated again at the NNPDF 2010 Family Support and Medical Conference.
August 5, 2010
Tinkerbell Monica flying high on the family's Disney trip.
Simon and Monica in the shark's mouth Heather and Monica Taillefer with Piglet
Snuggled safely in Daddy's arms.  Mom and daughter with Piglet at Disney.
Monica in Belle dress Heather Taillefer and Baby Monica
Monica in her beautiful yellow "Belle" dress. Thirteen-month-old Monica's impish grin might have something to do with the frosting on her hands...    :-)
Monica Mouse cake
"Monica Mouse" celebrated her 14-month birthday on October 5, 2010. Monica as a Ladybug - Halloween 2010
Monica in red Christmas dress Heather, Simon and Monica Taillefer
Monica glows brightly with her
Merry Christmas smile
December 2010
The Taillefer family continues to cherish every day they have together.
Monica's 15-month turtle birthday cake. Monica wants to go cruisin' in her pretty pink car for her 16-month birthday!
Heather has developed quite a talent for decorating cakes in her baby's honor.  Here, a cake fit for a 17-month-old Princess! A ladybug cake for a little 18-month-old ladybug.
Monica's 19-month birthday. And her 20-month birthday!
Heather and Simon treasure Monica as the precious gift she is.  Here they are celebrating her 21st month of life. The 22-month birthday of a Princess.
Simon, Monica and Heather on Monica's 23-month birthday. Monica's 2nd birthday (24 months)!
August 2011
Like the "Little Engine that Could," Monica celebrates her 25-month birthday. Monica sneaking a bit of frosting from her 26-month birthday cake, lovingly decorated by her
mom, Heather.
Twin unicorns on Monica's 27-month birthday! Simon and his cute little chick, Monica.
Halloween 2011
Bath and bubbles fun Playtime
Bathtime and bubbles! One busy little girl!
28 month birthday photo 29 month birthday photo
Minnie Mouse and Monica with mom, Heather, on Monica's 28-month birthday Monica can hardly wait to taste that colorful cake celebrating her 29-month birthday!
Hope is in my genes poster Hair time fun
Monica's poster for Rare Disease Awareness Day 2012 Playing "girlie stuff" with Mom
30 month birthday Caterpillar cake for Monica's 31 month birthday
A whimsical pink octopus was Heather's creation for Monica's 30-month birthday party. Eye-to-eye, nose-to-nose "I love you's" on
Monica's 31-month birthday.
32 month birthday photo 32 month birthday
In spite of serious physical challenges, Monica continued to smile and bring joy to those around her.
Here, Monica gives her mom a kiss and the family celebrates 32 months of a beautiful life!
Ice cream cake from Aunt Julie
Aunt Julie brought a special 32-month birthday ice cream cake to Monica at the hospital.
Princess Monica Taillefer
"Princess Monica" Taillefer
August 5, 2009 - May 2, 2012

 

Thank you, Heather and Simon, for sharing your family's story and photos with us. 

Monica's joy-filled life and persistent smiles help us remember that every day is a gift.

   

 [Nov 3, 2010 mem; Dec 27, 2011 mem; May 10, 2012 mem]