Archive | September, 2015

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

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Our beautiful Rapunzel

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September is Leukodystrophy Awareness Month

10 Sep

White-Matter-Matters-Lauren

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…

#WhiteMatterMatters

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

http://judsonslegacy.org/latest-news/white-matter-matters-campaign