Tag Archives: Krabbe

Happy 7th Birthday to our sweet Angel Lauren!

8 Jan

Warning – This is a longish post I wrote at 4:30am on Lauren’s birthday. If you found us through Lauren’s Random Act of Kindness campaign and want to skip to those details you can check out the link below.

https://lifewithlol.wordpress.com/lifewithlolrak/

Lauren with Zoe (1)

January 8th 2011 – Lauren Olivia Loughheed would be born, my beautiful, perfect daughter.

The contractions had begun on January 7th around 3pm. My mother had been visiting with me at home. With every first contraction I felt a mix of wonder and fear. So excited to meet our daughter and the fear of the unknown of what having her (i.e. childbirth) would be like.

I remember our trip to the hospital – We were driving through the snow, there was a buzz of excitement in the air – Soon I would meet her and my life would be forever changed. But not before making Stephen turn back home because I forgot my Yoga pants, which I NEEDED with me that night at the hospital and could not go without. (They of course, never left my hospital bag once we put them in there)

By 2am on January 8th (after our second attempted trip there) we were in the hospital waiting on her to make her entrance into this world.

As I settled in, for what would be another 9 hours of waiting, the day was going to become even more special. My best friend since childhood had arrived at the hospital to welcome her own princess into the world as well! My imagination, already conjuring up a beautiful life for both our girls – destined to follow in the mothers tracks and to live as the best of friends. What I didn’t know then was that those dreams, and the life I had imagined for our daughter was one that was never to be. My bliss, excitement and joy would be shattered just 10 months after this day when she would be diagnosed with a terminal disease – Krabbe Leukodystrophy. I hate Krabbe Leukodystrophy.

I sit here, the words I want to share muddled. I have too many thoughts, too much to share. I want to tell you about the incredible joy and happiness Lauren brought into my life – the beauty and inspiration. With every breath she took, I saw the world more closely. In winter I didn’t just see our cold and bleak surroundings – I saw the sun shining on the snow, the stunning glow of it. Snowflakes and frost were indescribably beautiful, the silence of winter so peaceful. She brought a warmth to the coldest days. In the summer, the world was so alive – the magnificence of the colours around us were appreciated in a way that as an adult I had forgotten. Lauren made me look and remember how beautiful our world was, I wanted her to experience it all!

Life with Lauren wasn’t perfect (although she certainly was!), I experienced and continue to experience many dark days. The memory of her illness and the pain she experienced at times still haunt me. With her removed from this world, my drive to focus on all the good and beauty has become much more difficult. Without Lauren in my arms, I am able to see the big picture of what her disease had done, how incredibly horrible it had been. Living in the moment vs then having a chance to review a collection of moments is so very different.

If you don’t know our story, I invite you to look back through our blog articles. Then read about our family and our journey with this terrible disease. As a short summary I can tell you, our daughter was born appearing HEALTHY, she hit milestones, some early even! We were gifted smiles, her sitting, her first waves, and even a couple of words. She was as perfect as can be. In her 8th to 9th month, small changes began, unnoticed or brushed off at first. For each change we would have an excuse.

Irritability – teething of course!
Her absolute resistance to eating solids – they each start on their own time
Her stiffening legs – maybe she wanted to stand!
When she wasn’t sitting as well as before – She’s tired, she’s busy growing

We were new parents, we didn’t know things weren’t right. Then again the parents around us didn’t either, not until the disease really began to show. Our daughter began regressing much more rapidly in the month of October 2011. Thinking back now with my stomach in knots, I know that I knew at the time that something was off, but I could not have ever imagined what was to come. How could I know, a fate worse than any of my nightmares was waiting.

Lauren lived to be 4 years old and 3 months. That was well after the prognosis we had originally received. In that time we vowed to give her a full and magical life. We travelled, we had her experience swimming and music and as much fun as we could find.

Through Lauren’s life we were afforded many beautiful acts of kindness from others. Sometimes we would receive acts of kindness from friends, people we had known from our own childhoods but had lost touch with or even strangers who had heard about Lauren. It was another gift that Lauren had given us. A reminder of what good still existed in the world. I truly believe that we made it through her life because of our awareness of good. Without the kindness and good around us – I’m not sure if we would have been able to come up out of the darkness that had been consuming us since the moment we knew that her life was going to be unimaginably hard.

Today Lauren would be 7 years old! Our big girl. We miss her terribly.

To celebrate, we are continuing our Random Act of Kindness Campaign in her memory. #lifewithlolRAK 

If you would like to participate, the campaign will run until the end of this month. Its easy – you do good and then share it. There is no act too small to note, and it doesn’t have to fit in any specific box or description – Just be kind!

To help spread the campaign, use the hashtag #lifewithlolRAK and post a picture or description of an act of kindness (Random or not) that you completed in Lauren’s memory. This will not only help us to honour her legacy but to spread awareness of her disease. Spreading awareness not only helps bring a spotlight on Krabbe Leukodystrophy and its need to be included in newborn screening and research but also aids newly diagnosed families, to find us and to find a supportive community.

There’s a post with printables that you can include with your act here. Please check out the link if you like.

https://lifewithlol.wordpress.com/lifewithlolrak/

Also feel free to comment here with any fun acts of kindness that you took on this month in our Lauren’s memory. Thank you so much for sharing in this journey with us, and for wanting to do good.

xox

LIFEWITHLOLRAKPRINTlifewithlolRAK1

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Celebrating Lauren’s 6th Birthday with Kindness #lifewithlolRAK

6 Jan

(version française suit)

I can’t believe that another year has passed, 2016 wasn’t an easy one, but we are ready and open for 2017 and all the kindness and positivity that it will hold (and that we will focus on!)

This year held many new milestones- some fun amazing one’s with Lauren’s little sister and others that were very hard and difficult, missing our Lauren and my big brother.

On January 8th Lauren will be celebrating her 6th birthday among her angel friends. Here on earth we wanted to do something very special to celebrate her memory.

We are proud to announce we are once again hosting a Random Act of Kindness Campaign for the entire month of January. We would love for you to participate in this campaign that is sure to bring a little fun and warmth to the cold month of January.

A Random Act of Kindness is a selfless act performed by a person that can bring help, kindness or cheer to another individual. You don’t have to spend any money to perform an act of kindness, and what you do is up to you!

If you would like to participate in our campaign throughout the month of January, we would encourage you to the following

1 – Print out or use the campaign tags or image included below

2 – Prepare your random act of Kindness

3 – Remember to include the tag or image, consider leaving extra’s behind for the next person to use to help keep the movement spreading.

4 – Take a photo, post an image or your story to social media using hashtag #lifewithlolRAK

5 – Share the campaign on your social media!

We will share some of our favourites at the end of the month!

Click below to save the printable tags.

Please share this post on all of your social media to help make this campaign soar!

Thank you for helping us celebrate Lauren’s Birthday!

lifewithlolrakprint

laurenrak17

6ème fête d’anniversaire de Lauren

Je ne peux pas croire que Janvier est déjà là, que nous dit au revoir à 2016 et saluent notre deuxième année sans notre Lauren.

Les jalons de nouvelles vacances et les expériences sans Lauren ont été difficiles mais nous y faire face du mieux que nous pouvons et essayer d’honorer sa mémoire au maximum le long du chemin.

Le 8 Janvier Lauren fêtera son 6ème anniversaire parmi ses amis d’ange. Ici sur terre, nous voulions faire quelque chose de très spécial pour célébrer sa mémoire.

Je voudrais annoncer fièrement que nous organisons un campagne de Acte de Bonté au Hasard encore un fois, pendant tout le mois de Janvier. Nous aimerions vous inviter à participer à cette campagne amusante qui est sûr d’apporter de chaleur  a ce mois froide de Janvier.

Une Acte de Bonté au Hasard est un acte altruiste accompli par une personne qui peut apporter de l’aide, la bonté ou de la joie à un autre individu. Vous n’êtes pas obligé de dépenser de l’argent pour effectuer un acte de bonté, et ce que vous faites est à vous!

Si vous souhaitez participer à notre campagne pendant le mois de Janvier, nous vous encourageons à la suivante

1 – imprimer ou utiliser les balises de la campagne ou de l’image incluse ci-dessous

2 – Préparez votre Acte de Bonté au Hasard

3 – Pensez à inclure la balise ou de l’image, envisager de laisser derrière de supplément pour la prochaine personne à utiliser pour aider à garder le mouvement se propager.

4 – Prendre une photo, ou les poster votre histoire sur les médias sociaux en utilisant le hashtag #lifewithlolRAK

5 – Partagez la campagne sur vos médias sociaux!

Nous allons partager certains de nos favoris à la fin du mois!

Cliquez ci-dessous pour enregistrer le PDF de balises imprimables.

S’il vous plaît partager ce post sur l’ensemble de vos médias sociaux pour aider à faire de cette campagne monter!

Merci de nous aider à célébrer l’anniversaire de Lauren!

Lauren RAK FRlaurenrakFR

Celebrating Lauren’s 5th Birthday

2 Jan

(version française suit)

I can’t believe that January is already here, that we said goodbye to 2015 and are greeting our first year without our Lauren.

The milestones of new holidays and experiences without Lauren have been tough but we face them the best that we can and try to honour her memory to the fullest along the way.

On January 8th Lauren will be celebrating her 5th birthday among her angel friends. Here on earth we wanted to do something very special to celebrate her memory.

I would like to proudly announce that we are hosting a Random Act of Kindness Campaign for the entire month of January. We would love for you to participate in this fun campaign that is sure to bring a little fun and warmth to the cold month of January.

A Random Act of Kindness is a selfless act performed by a person that can bring help, kindness or cheer to another individual. You don’t have to spend any money to perform an act of kindness, and what you do is up to you!

If you would like to participate in our campaign throughout the month of January, we would encourage you to the following

1 – Print out or use the campaign tags or image included below

2 – Prepare your random act of Kindness

3 – Remember to include the tag or image, consider leaving extra’s behind for the next person to use to help keep the movement spreading.

4 – Take a photo, post an image or your story to social media using hashtag #lifewithlolRAK

5 – Share the campaign on your social media!

We will share some of our favourites at the end of the month!

Click below to save the PDF of printable tags.

Please share this post on all of your social media to help make this campaign soar!

Thank you for helping us celebrate Lauren’s Birthday!

 

Lauren RAK

Click here to download the PDF

laurenrak

Click here to download the jpg image

—-

5ème fête d’anniversaire de Lauren

Je ne peux pas croire que Janvier est déjà là, que nous dit au revoir à 2015 et saluent notre première année sans notre Lauren.

Les jalons de nouvelles vacances et les expériences sans Lauren ont été difficiles mais nous y faire face du mieux que nous pouvons et essayer d’honorer sa mémoire au maximum le long du chemin.

Le 8 Janvier Lauren fêtera son 5ème anniversaire parmi ses amis d’ange. Ici sur terre, nous voulions faire quelque chose de très spécial pour célébrer sa mémoire.

Je voudrais annoncer fièrement que nous organisons un campagne de Acte de Bonté au Hasard pendant tout le mois de Janvier. Nous aimerions vous inviter à participer à cette campagne amusante qui est sûr d’apporter de chaleur  a ce mois froide de Janvier.

Une Acte de Bonté au Hasard est un acte altruiste accompli par une personne qui peut apporter de l’aide, la bonté ou de la joie à un autre individu. Vous n’êtes pas obligé de dépenser de l’argent pour effectuer un acte de bonté, et ce que vous faites est à vous!

Si vous souhaitez participer à notre campagne pendant le mois de Janvier, nous vous encourageons à la suivante

1 – imprimer ou utiliser les balises de la campagne ou de l’image incluse ci-dessous

2 – Préparez votre Acte de Bonté au Hasard

3 – Pensez à inclure la balise ou de l’image, envisager de laisser derrière de supplément pour la prochaine personne à utiliser pour aider à garder le mouvement se propager.

4 – Prendre une photo, ou les poster votre histoire sur les médias sociaux en utilisant le hashtag #lifewithlolRAK

5 – Partagez la campagne sur vos médias sociaux!

Nous allons partager certains de nos favoris à la fin du mois!

Cliquez ci-dessous pour enregistrer le PDF de balises imprimables.

S’il vous plaît partager ce post sur l’ensemble de vos médias sociaux pour aider à faire de cette campagne monter!

Merci de nous aider à célébrer l’anniversaire de Lauren!

 

 

laurenrakFR

Cliquez ici pour télécharger le JPG

 

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

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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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.

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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!

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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!

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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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Turning four!

3 Feb

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So this past January 8th 2015 Lauren hit a milestone that I couldn’t have imagined when we began this journey a little over 3 years ago…she turned four!

It has been another amazing year, a gift of experiences and memories that I am so thankful for. This year we took Lauren to Disneyland in California, to see the Las Vegas lights and to witness the amazement that the Grand Canyon in Arizona has to offer.

At each stop we visited with friends who have walked similar paths, having a terminally ill child. Each of these parents are incredible, warm and loving people.

I promise to post some great pictures and updates of all the fun that we had in 2014 soon. We’ve just been so busy with life lately that finding time to post has really been a problem.

Along with the good, there was some bad – this past year Lauren’s biggest struggle with her health has been a line up of UTI’s with one following the next. Her muscle tone has weakened and with it her bladder does not empty as often as it should. This week we started Lauren on another round of antibiotics for a new infection, this is our 4th round in less than 6 months. The good news is that I’ve become much better at spotting the warning signs and caught this one early.

We are currently in Party Planning mode in our house as we are preparing for Lauren’s 4th Birthday Party, a carnival themed fundraiser benefiting our family and Lauren’s rehab centre’s foundation, The MAB Mackay foundation.

Rouge Event Design has done a wonderful job in helping us to plan another wonderful event this year. Last year’s event was amazing and we’re hoping for an even better one this year!

If you would like to attend the event, it is happening this Sunday, February 8th from 11-4 at the Dollard-des-Ormeax Banquet Hall, 12001 De Sallaberry. The event costs $5 for adult entry and includes a raffle ticket, kids entry is $10 and includes a loot bag (first 100 kids), and 4 tickets that can be used on activities at the event.

Event Banner 2015

This year we have even more amazing sponsors and fun things to do, we will have a bouncy castle, face painting, carnival games, arts and crafts, a magician, balloon animals, clowns, and more!

You can check out of Facebook event page for more information by clicking here.

We also have some of the most amazing raffle prizes, including hockey tickets, event tickets, photography certificates and a bunch more!

This list is just a sample of what we have to raffle off.

 

small paper size flyer

 

If you can’t attend the event but would still like to buy some raffle tickets you can do so by clicking here, and entering the appropriate dollar amount for the number of tickets that you would like. The only catch is that you are responsible for shipping if you are not located in or near Montreal, Qc. Unfortunatly unless you can attend, if you are pulled for an event prize (hockey tickets, concerts, etc) we will have to re-draw a new winner.

Don’t want raffle tickets but would still like to support the event? You can chose to donate any amount by clicking here instead.

Here are some picture from last years event!

If you are on Facebook, I encourage you to like our page, we’re a little bit better on posting updates there.

https://www.facebook.com/Lifewithlol