Tag Archives: lauren loughheed

September is Leukodystrophy Awareness Month

10 Sep

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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

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 🙂

http://www.cbc.ca/player/News/Canada/Montreal/ID/2652737423/

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In honour of Lauren’s 3rd Birthday

26 Jan

Well the BIG day is upon us – Lauren’s Birthday Party and fundraiser benefiting the MAB Mackay foundation and our family is today January 26th!

To commemorate the big event, Lauren’s auntie Marlena put together a really fun video that I would like to share. Thank you Marlena! 🙂

Click here to open the video on a mobile device

I’m up late tonight finishing off some of the last-minute details and because I’m too excited to sleep. I haven’t felt this much nervous excitement about an event since my wedding day! But I have some awesome helpers that are sure to make the day a success.

We have been working so hard along with our wonderful party planner Rania of Rouge Event Design to throw a birthday party to be remembered. Rania has taken a dream that I had and turned it into something amazing and I can’t wait to see it all play out.

If you are available you should come check us out at the Dollard-Des-Ormeaux Civic Centre Banquet hall from 11am-4pm. There will be tons of fun activities for the kids as well as some amazing raffle prizes for the adults. I really hope that you will consider joining us!

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