About Us

In April 2010, our precious daughter Kaitlyn was diagnosed with Niemann-Pick Disease (Type A), a rare, fatal genetic disease with no cure. We decided to create this website for our family, friends and other families confronted with Niemann-Pick. It is our hope that we can help others by sharing Kaitlyn's journey. Our sweet girl lived a full life from July 1st, 2009 - March 22nd, 2012.

Monday, January 27, 2014


It's almost been 2 years. It's difficult to wrap my mind around that fact. I have learned a lot, much of it the hard way.

When Kaitlyn was here, my job was to be the best dang mom I could be for her while she was here. I feel I did a pretty good job. I wouldn't change how I took care of her and loved her. I cherished every moment with her.

I also told myself that I would deal with all of the other life problems later after she died. Why should we waste our time on all those other things when we should be spending time with her and making her quality of life the best it can be. It's only for a short time compared to the rest of our lives. It all made sense in the moment. How could I be so selfish to think of anything else but her?

Stupid, stupid, stupid. Visualize me banging my head on a wall.

My intentions were good but I was completely blind to the damage that I was doing to my marriage and family.

People would tell us to "Go on a date night"... I would think, "How can we be so selfish and leave her when she could die while we are gone? I don't want to be away from her. The time we have with her is so limited, how could we?!"

The fact is that she could have died while we were on a date night. We could have missed saying goodbye... but it shouldn't have mattered.

My marriage should have been the priority. We should have been communicating about our current issues despite our situation or how Kaitlyn was doing that day.

No matter how right it felt to make Kaitlyn the priority, it was wrong to make her the ONLY priority. People told me but I didn't listen. I didn't take them seriously because they weren't in my shoes. I felt like it was so easy for them to say, "Go have a date night", when they didn't have a child at home who was dying.

For those of you who ARE dealing with this or anything like this right now, I beg you to make your spouse a priority too. You will need each other more than ever down the road and if you have other children, like we do, they will also feel the ramifications. Dealing with things later is a lot more difficult than dealing with them right then and there.

Have time for just the two of you, even if it's after the kid(s) have gone to bed to talk and spend time together. The even further lack of sleep is worth it, trust me. It's easy to go separate ways and do different things to unwind in the evening. I liked to read. He liked games. I was upstairs. He was downstairs. Sometimes we just want to escape reality in a book or in a game. There is nothing wrong with that but if we are doing those things instead of spending quality time with our spouse, it will drive you further apart.

Another thing is to not let your child's condition supersede all other issues. It's not a matter of what is the biggest issue or problem right now. Don't minimize your feelings or hurts because they pale in comparison to what your child is going through. Speak up. Your feelings matter and your spouse's feelings matter. Don't make it a contest or make your spouse's feelings and needs out to be trivial. They are real and they need to be addressed in a loving manner.

I wish I had done things differently. Please take my advice so that you aren't looking back and seeing things so clearly like I am.

Monday, December 23, 2013


Grief should be a four letter word. There is nothing like it. Two years ago we were a family of four and tonight I am home alone sitting in my bed staring at Kaitlyn's bow tree thinking what the @!*^ happened?! (For those of you who know me well, you know that I do not like profanity so this is a big one for me.)

I'll tell you what happened.
Grief happened.

The world keeps going and you go through times where you are numb and feel fine and other times when you are angry at everything or you crumble at the sight of a hair bow.

That last one was me tonight as I got out each bow and put it on Kaitlyn's tree. I smiled through tears remembering the cute outfits she wore with many of the bows and the feel of her soft curls every morning when I would put the bows in her hair. Happy and heart-wrenching twisted together.

You are haunted by moments of holding your lifeless child for the very last time feeling their skin get cold and instinctively trying to keep them warm knowing fully well that it won't do any good.

A regimented schedule of medication and monitors suddenly gone leaving you to wonder, what now? You have to rediscover yourself with little energy to do so.

After a child dies you need a mandatory marital rehab to help guide you through what happened and what is about to happen to your family. Grief has a way of tearing you apart like no other.

When one spouse is wanting to work on the relationship, the other isn't. Then when the other spouse wants to work on things, the other doesn't. It's a vicious cycle that leaves marriages broken and seemingly hopeless. 

If I could change everything negative that happened after Kaitlyn died, I would. I tell Kaitlyn over and over how sorry I am for everything that has happened and that I wish we could all just be a family again. My heart is crushed for Cole and what he is going through and will go through. I'm tired of people telling me how resilient kids are. He's not going to be just fine having a sister who died and parents who aren't together, nor should he be okay with it. I am not okay with it. 

Please don't get me wrong... I fully understand why Kaitlyn was here and the amazing things she did. I am so proud to be her mom and I am extremely blessed. I have no doubt in God or in the ways that He used her to exceed our expectations in turning an extremely difficult situation into a beautiful one!

When I started this blog, I promised myself that I wouldn't sugar coat anything but give a realistic look into what life is like with Niemann-Pick Disease. Now I am telling you what life is like after... at least how it's been for me. A misspelled four letter word.

Monday, July 1, 2013

It's Kaitlyn's 4th Birthday!

I can't believe that Kaitlyn would be 4 today. I look at little girls who are around that age and imagine what she would be like, what she would be interested in and what our conversations would be like. It's heartwrenching but I know that she is in the best hands possible right now and free from Nieman-Pick Disease.

Kaitlyn's 1st Birthday

Later today, Cole and I are going to go visit her grave and send 4 balloons "up to heaven" to her. I want Cole to remember Kaitlyn and celebrate her birthday in a fun way so we are going to have some cupcakes and Cole will get to blow out the candle for Kaitlyn. :-)

I also made a photo album of pictures that are just of Kaitlyn and Cole so that he can have fun going through them and remembering the fun times they had together.

Hopefully I'll be able to take some pictures and share them with all of you. Thank you to everyone who has made it a point to remember Kaitlyn today. It means the world to me.

I am going to be making a donation to the Niemann-Pick Disease Foundation in memory of Kaitlyn. If you feel so inclined, please click here to make a donation and mention "in memory of Kaitlyn Bourgeault, Type A".