Training for the Journey ahead

13 Sep

Every breath taken burned my lungs, my chest felt heavy and sore. The air was cool against my skin, leaves cascaded slowly from the trees above landing gently on the dark asphalt. The rain was starting up again, falling rhythmically against the ground. In my struggle, I felt at peace. I could feel her by my side.

Today marked the first day of my training for the Princess Marathon at Disney World coming up in February 2016. It was also my first day back to running since getting pregnant last fall. Needless to say I have a long way to go, today I was only able to complete 2 kilometres before my legs felt like wooden stilts. Struggle aside – walking home with stiff legs and congested lungs I found myself feeling taller, I felt stronger.

There’s something about running, I can feel an energy connecting me to nature. I feel Lauren in that energy – it’s just Lauren and I running together.

A week before Lauren left us we had gone to Disney World together. Our friends had given her a beautiful Rapunzel dress and shoes, she looked breathtaking (she always did). For the Disney run I will be running for her in a Rapunzel inspired running outfit (still to be created). Zoe (wearing a Rapunzel dress of her own!) and Stephen will be there to cheer me on.

I will be joining my good friend Nichole on this run – she will also be running in memory of her daughter. Nichole lost her beautiful girl Emma to Krabbe disease a couple of years before Lauren. We like to imagine that our girls are playing together in heaven and have become wonderful friends.

It is my intention and hope that I can share my progress and feelings in preparation for my February run – it is sure to be an emotional journey. I hope that you will join me and encourage me along.

2km down, only 19 more to train up to 21!

It was a rainy day for a run

It was a rainy day for a run


Our beautiful Rapunzel

September is Leukodystrophy Awareness Month

10 Sep


September is Leukodystrophy Awareness month. Leukodystrophy is a disease that affects the white matter in the brain, it helps to send signals across the brain and is essential to gross motor function.

Our daughter Lauren had Krabbe disease which is a form of Leukodystrophy, the average age of her disease is said to be 13 months. Lauren lived to be 4 years old and 3 months.

Born appearing healthy, Lauren reached healthy milestones until about 8 months of age. By 9 months it had become obvious that something was wrong when our princess couldn’t sit up well on her own anymore.

By 10 months her limbs had become stiff, her head heavy to support and the use of her left side almost gone.

By 11 Months (her first Christmas) she needed daily painkillers and had begun tube feeding by her nose. She still smiled and laughed but both were a little weaker each day.

At 12 Months Lauren had a gtube placed that would help tremendously with her feeds.

By 16 months Lauren’s vision had become poor, but would come and go for the next few months.

I still remember the overwhelming feelings, the helplessness of watching my child lose what felt like everything at the time.

Officially diagnosed with Krabbe at 11 months of age, I watched her deteriorate significantly within the next 5 months.

Once we were able to shake off a little bit of the fog and hopelessness of our situation, Stephen and I took action in making Lauren’s life as joyful as possible. Though her abilities limited her, she still experienced the world and we wanted to make our time with her count.

We lost Lauren on April 13 2015

Did you know that all of the above might have been avoidable if newborn screening had been available to us. Through newborn screening, Lauren would have been a good candidate for a stem cell transplant that could have stopped the disease in its tracks before much of the damage had been done. If only…


Check out Judson’s Legacy’s website to learn more about the #WhiteMatterMatters campaign

Lauren’s Funeral Details

16 Apr


Lauren Olivia passed peacefully surrounded by family on Monday afternoon at 3pm.

Both the visitation and the funeral are open to anyone who would like to attend. In memory of Lauren it would be nice (of course not required) if you could wear something lavender, pink or purple, even if it’s only an accessory.

Visitation will be Friday April 24 from 2-4pm and 6-9pm at Collins Clarke Funeral home (222 Autoroute 20, Pointe-Claire, QC H9S 3X6)

Lauren’s funeral will be held on Saturday April 25th at 11:30am at St Edmund of Canterbury Church (105 BEACONSFIELD BOUL, Beaconsfield, QC).

If you would like to send something In lieu of flowers you may send us a financial gift through Paypal, the funds will go to help with final expenses and to set up the Lauren Olivia Memorial Fund – helping support other families who are also struggling with a sick child and fund Leukodystrophy research.

Donations can be made using the paypal link below, or through the tilt campaign that Lauren’s Mommy’s friends had started. (Thanks Chic Mamas!)

Click Here for the Paypal Link


Or Click Here For the Tilt Campaign:

This has been the most difficult week of our lives, our daughter was our heart and soul, the sense of loneliness is incredible. Everyone’s kind words, posts and support has helped to comfort us. I can’t describe the feeling I had the morning after our daughters passing when I opened up Facebook to see Lauren had taken over my entire newsfeed. So many had shared stories and pictures about our princess – our hearts were warmed. On Lauren’s page there are still countless messages waiting for us – I can’t help but feel blessed and overwhelmingly touched by the impact our baby girl has had on others and their lives.

Buddy hasn’t been quite the same since Lauren is gone, he is constantly searching the house for his best friend and sister. I used to cry when Lauren was alive at moments when her disease overwhelmed me, Buddy had always seemed used to and indifferent of those moments, now when I cry I find him jumping into my lap trying to kiss me to ease the pain. It’s truly remarkable.


Rest in peace sweet angel Lauren

14 Apr

Our beautiful Lauren left us for heaven yesterday afternoon (April 13, 2015) at 3:00pm. We were so lucky and privileged to be her parents. I am so proud of her strength and spirit. Thank you all for your wonderful prayers and thoughts. Her life was a miracle, we thought two years old would be something but she lived over four, everyday a wonderful memory 


January 8th 2011 – April 13 2015

Check out our interview with CBC Montreal News

10 Feb

Kate McKenna of CBC Montreal News swung by Lauren’s party on Sunday. She interviewed Stephen and I about the event – if you would like to check it out click on the link below! You will have to fast forward to minute 8:00 of the broadcast :)






Raffle Winners From Lauren’s Day Fundraiser

8 Feb



The prizes have been drawn and now we are ready to announce the winners! Thank you to everyone who participated in the raffle and congratulations to all of our winners! (Apologies if we misspelled your name!)

Winners will be contacted over the next week or so to arrange pick up/delivery of prizes!

Our Winners!

Prestige Hockey Tickets – Mia Rubino

Golf & Dinner – George Paigakuna

Converse 5-Pack – Michael Vathilakis

Voices & Visions Medium Reading – Mark Raijn & Niki Di Stefeno

Taylor Made R11 Driver – Karen Zadorozny

Brian Adams Tickets – Robin Trudell

Prenatal & Young Family Center 5 days of daycare – Dabby

Converse Bag Set – Maria Harvey & Jane Stowe

Melanie Wand Photo Package – Chris Oliver

Mondu Pet Basket – Genevieve Turcotte

Kreative Memories Gift Certificate – Tom Kearvell

Model M Bag Great Bag Co

  • Dulce Costa
  • David Carvalho
  • Dan Warin
  • Neven Ivnik
  • James Vardy
  • Amanda V
  • Donni Mellozzi
  • Lauri Rappaport
  • Angie Iadinardi
  • Andy

Palmers Gift Baskets – Ava Iadinardi & Melissa Vaney

Bistro Rouge Gift Certificate – Mia Rubino

Ocean & Earth Board Pants Set – Emilie Minssieux

Pearls for Girls Gift Box – Jennifer Banks

Artizan Gift Certificate – Nancy Cammelli

K-Cup Mega Pack – Craig Boden

Action Sport Physio Massage – Micheal

UC Baby Heart Beat Bear

  • Louise Jones
  • Theresa Solmerano
  • Karen
  • Eliott Yell

Stars on Ice – Lea Rainforth

Horizon Gift Basket – Robert Volpe

Harlem Globetrotters – Dan Wanni

Crème de la Prem Baby CPR Course – Hiten & Alice File

Crème del la Prem Baby Massage – Caroline Bertea

Batton Rouge Gift Card – Mandy

Mama Fox Gift Set – E. Gronau

Moe’s Bar & Grill – Karen Hayden

Infinity Scarf by Emily Diamond – Lisa R

Salon Augustin Cut & Blow Dry – Karen Simms

Dejeuner Cosmopolitain – D. Panneton

Buy Canadian First Tail Wags Helmet Cover – Dan Wonni

My Pretty Creativity Handmade Cards – Mat Trudeau

San Tropez Private Dance Class – Corry & Jeff Montgome

Nails by Connie Gel Manicure – Kelly Tipney

Unique by Christine 3D fiber lash mascara – Jane Stowe

Lemon Locket – Kelly Tipney

David’s Tea Gift Bag

  • Seetha
  • Michael Vathilakis
  • Sarah Hillman

Umbra Scarf Organizer from Regalo – Frances Layden

Scentsy Gift Basket – Kathy Aspell

Starbucks Mugs – Marie Dedes

CBC Montreal Interviewed us about Lauren’s Party today, tune into the 11pm news tonight Feb 8th to see the broadcast!

Today is the big day!

8 Feb

So much planning, anticipation and excitement, today is the day – Lauren’s big birthday party fundraiser!

Lauren is sleeping peacefully, while daddy and much of our family and friends have already made their way to the hall to set up.


Raffle prizes and donations have been loaded into cars and are ready to be displayed in the hall. This year we have been extra fortunate with our donations and are so excited to be able to offer so many exciting prizes!


I want to take a moment to thank everyone who has helped, donated and offered our family support and encouragement while planning this event. Today will be a great success and you are all to thank!


So if you have time today and are in the area, we hope that you will pass by our fundraiser and come say hello. Lauren, Stephen and I would be thrilled to see you!



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