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".  

One Year Later- 3/22/13

It is very difficult to articulate the feelings and emotions that I felt on Friday, the one year anniversary of Kaitlyn's death. I wasn't sure how I would react or what specifically I would react to. Would it be the day in general? Would it be the memories of how it happened? Would it be memories of her funeral? I just didn't know what to expect.

 I woke up and knew the significance of the day and felt a "dark cloud" over me but I wasn't upset... yet. I decided to stay home with Cole and spend the day together and meet Chip at Kaitlyn's grave site later that day to place a special heart-shaped floral arrangement on her grave.

During the morning hours though, I found myself starting to "busy" myself... cleaning the kitchen, starting laundry, picking toys up and doing a lot of random activities to keep my mind off the obvious. That didn't work. The closer the clock got to 12:34pm, the very minute Kaitlyn died, the more anxious and overwhelmed I got.










Being that Kaitlyn passed away at home, I felt the flood of emotion and memories resurface. I felt a heavy weight on my heart and shoulders. A sadness of not being able to hold her or see her smile. It is still surreal that she isn't here. Part of me feels like it was yesterday and another part feels like it was forever ago.

Last year at her memorial service

Around 12:25pm - 12:35pm, I spent some alone time at the very spot where she passed away, in the master bedroom. I felt closer to her there than I did at her grave site later that day. I cried tears that no parent should ever have to cry. But oddly at 12:35pm, it was over and I was "okay".

We met at Kaitlyn's grave and I sat with Cole and said a prayer to God thanking Him for Kaitlyn and the time that we got to spend with her. We know that she is in the best hands possible now and that one day we will see her again.

I would be lying if I didn't say that the whole weekend was up and down emotionally for me. It would mean the world to me if you could keep us in your prayers as we move forward in our lives but at the same time keeping Kaitlyn in our hearts. It is a difficult concept to grasp for me... trying to be happy but grieving at the same time. The grief never ends, it just changes.

On Friday evening, I invited everyone to light a candle for Kaitlyn at 8pm and say a prayer for those children with Niemann-Pick Disease and the families who persevere through it all.

I was blown away at the response and the photos that were posted of all the candles lit in memory of Kaitlyn. I also chuckle a little because anything having to do with Kaitlyn, whether she is with us on Earth or in Heaven, is a big deal. She WAS born in Texas after all... everything is bigger in Texas... bows... hair... :) She made a Texas sized impact on the lives of all of you and a year later, it was so amazing for me to see that she is still doing God's work. I am so proud of  you Kaitlyn!

Check out my Facebook page and the event page to see some of the amazingly beautiful images from Friday's candle lighting around the world!

Click here for my Facebook page.

Click here for the event page.

Light a Candle for Kaitlyn

Please join me in lighting a candle 

(at your home) at 8pm on the evening of Friday, March 22nd, in memory of Kaitlyn.

Friday marks the 1st anniversary of her death. It would mean so much to me if you took a minute to say a prayer for the children around the world who have Niemann-Pick Disease and also for their families who live with the reality that there currently is no cure or treatment. I pray that a cure be on its way soon. Please share the event with others! Here is the Facebook event link that is open to the public. 

Facebook Event Page- Light a candle for Kaitlyn 

I would love to see pictures of the candles if you can snap a photo and post it to my FB page or the event page. :-)

Here is a beautiful poem that my friend Judy wrote in memory of Kaitlyn. 

Kaitlyn's Light
by Judy Farrar

We light a candle in memory
Of Kaitlyn, who graced our lives,
With love, joy and laughter,
And a beauty that has survived.

Her eyes spoke to us with a light
That lit up her beautiful face.
And in her time here accomplished much
With charm and impish grace.

God only lent her for awhile.
Then He called her back to Him.
But she left a wonderful legacy,
And her memory will never dim.

As you light up your candle,
Remember others who remain.
Praying for a cure to come,
For none of their lives are in vain.

In loving memory of sweet Kaitlyn

Rare Disease Day- Feb. 28th

We need your help! On Thursday, February 28th, we'd like to ask that all of our friends, family and supporters join us in observing Rare Disease Day.

World Rare Disease Day is an annual observance held on the last day of February (February 28th or February 29th in a Leap Year -- a rare day) to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare and genetic diseases and their families.

For those of you who have followed Kaitlyn's Korner, you probably already know that Niemann-Pick Disease is among one of the 7,000 rare diseases that exist. Kaitlyn was one of only five children in the United States living with Niemann-Pick, Type A before she passed away. The National Institute of Health estimates that 50% of people affected by rare diseases are children, making rare diseases one of the most deadly and debilitating for children worldwide.

Let's raise some awareness so that we don't have to read awful statistics like this. Better yet, let's raise some awareness so that some day children like Kaitlyn will no longer have to suffer from rare disease because there will be better genetic testing, more research, actual treatments, and CURES!

So, what can you do to show your support??

• Post Kaitlyn's picture on your Facebook page. Heck, use it as your profile picture for even more exposure! Make sure to tag @GlobalGenes in all your pictures
• Wear your blue PERSEVERE wristband or t-shirt and post pics to my/your Facebook page wearing them along with messages of support for Rare Disease Day
• Join the Global Gene's Project's Wear That You Care movement and wear your favorite pair of blue jeans in support of rare and genetic disease awareness
• If you're so inclined, make a donation to the National Niemann-Pick Disease Foundation in memory of Kaitlyn Kay Bourgeault, NPD, Type A. Donate here: National Niemann-Pick Disease Foundation