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.

Friday, June 27, 2014

My Verse

At Elevation Church, we are currently in a series called Your Verse. I was recently asked by my volunteer leader if I would be willing to write about My Verse. I knew immediately what my verse is and was honored and thankful for the opportunity to share it with many people who don't know me well or Kaitlyn's life story. So here is My Verse!

Elevation Church's Your Verse Series
Click here if you would like to learn more or watch videos from the series!

Romans 8:28 
28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose

Growing up (I am now 35), I was very blessed in that nothing really “bad” ever happened to me or my family. There were pretty much no deaths or tragedies in my early years. The worst thing was my parents’ divorce when I was in middle school, which did affect me significantly. Other than that, life was pretty normal and happy. I grew up in a great Presbyterian church in Richmond, Virginia that gave me a basic foundation of who God and Jesus are but knowing and having a personal relationship with Him was a different story. I THOUGHT I knew what that meant but it wasn’t until late high school/college that I really got it and it was even later in life that my heart truly understood My Verse:  

28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
 
Long story short, I graduated college, eventually got married and then it all started. The not so happy events in my life that helped me truly understand My Verse. As a happily married young couple, we wanted to start a family and we got pregnant! Then we had a miscarriage. Then we got pregnant again! Then another miscarriage. Then we got pregnant again! Then a 3rd miscarriage. Life was not going as I had imagined it would. Depression and anxiety set in as I wondered if I’d ever be a mother to my own children. I personally do not believe that God planned on me having 3 miscarriages. I DO believe that if you are WILLING to let him take control in your life, he can use the SITUATION and YOU and turn a tragedy around for good and “for His purpose”. When you are in the middle of it all, it is very difficult to imagine how any good can come from tragedy or loss. I didn’t see it then, but I do see it now. I understand My Verse in a non-superficial, deeper way than I ever imagined.

A month before doing IVF (in vitro-fertilization) in the hopes of getting a “good quality egg”, we got pregnant with our daughter, Kaitlyn. She was the answer to our deepest prayers and longing. Something we doubted was possible, actually happened! For us, she was our miracle child, God’s direct answer to our prayers! 

















Kaitlyn Kay Bourgeault (pronounced like Boar-Galt) was born on July 1st, 2009! A healthy, beautiful, baby girl. Over the next 6 months or so, she was doing great but she wasn’t progressing like she should have been. She wasn’t trying to crawl or really sit up on her own. Her spleen and liver were enlarged and we were sent to see a geneticist. At the time, we were also trying to get pregnant with a 2nd child. We went to the geneticist and blood was drawn to try and narrow down what was going on. We immediately stopping trying to get pregnant because of the potential genetic issue, however; on April 22nd, we found out that we were pregnant!   

The very next day, April 23rd, 2010, we got the call that Kaitlyn had Niemann-Pick Disease, Type A (NPA). An extremely rare genetic condition with no treatment, no cure, and the average age of death was between 2-4 years old. WHAT?!?! She was almost 9 months old at the time when we received that call. The disease is double recessive meaning that BOTH the mother and father have to have the genetic mutation in order for the child to have the disease and each child we have has a 1 in 4 chance of also having it. We were beyond devastated! Devastated for Kaitlyn and devastated for our unborn child who could also have the disease.

 
Me with Kaitlyn and my pregnant belly!














I realized pretty quickly that all those miscarriages and counseling I received were preparing me for this. It’s like God and the devil were in battle over my soul, with God saying that he will turn it around for good because I love Him and was called according to his purpose.

When I say extremely rare, Kaitlyn was 1 of 5 alive at the time in the US and 5 is a pretty high number for NPA. How in the world did this happen? Everything in life was going great and then boom it hits the fan, but not without a huge blessing as well. Talk about emotional highs and lows!

On December 26th, 2011, Cole Alexander Bourgeault, was born. We had his cord blood tested and a few weeks later we found out that he was a carrier, just like his father and me, but HE DID NOT have the disease. That was one of the happiest days of my life. 

 
First time Kaitlyn held her little brother, Cole














As Kaitlyn’s disease took over her body, I decided to start a blog to keep family, friends, and newly diagnosed NPA parents aware of what was going on with Kaitlyn and what to expect. If I ever wrote a book, it would probably be similar to What to Expect When You Are Expecting but be titled What to Expect When Your Child is Diagnosed with NPA. It is so rare that you really don’t know what to expect! 
















As I wrote blogposts, my intention was to be real and honest about what was going on. Not to sugarcoat anything but also not to focus on the obvious negative. What happened next was something I was completely unprepared for. Emails and comments started pouring in from ALL AROUND THE WORLD! Friends on Facebook would share the link to the blogposts and it spread like wildfire. It was then that I truly realized both MY purpose and Kaitlyn’s purpose. I was her voice and she touched peoples’ hearts in a unique, amazing way. She brought parents closer together with their children. She had unbelievers start praying for her, which turned into a relationship with God. Some of the comments we received were:

"Kaitlyn has had a profound impact on me not only with my direct family but how I plan to carry out the rest of my life. In honor of Kaitlyn, I am going to be volunteering at my local children's hospital."

"I do believe in God, but never really have trusted in Him nor felt like he had a plan for me-or anyone until your story, You truly changed my outlook on life, God, my daughter, everything."

"Because of Kaitlyn, I strive to love on my two daughters more, and to TRULY cherish and dote on them."

"I promise to be a better mommy to my sweet angels. I promise to never take this life for granted, to hug them as often as I can and tell them how much I love them every, single day. You have helped me realize how precious life is and how important it is to love one another fully and completely."

"I had become bitter and resentful of a lot of things over the last several years. I didn't know how to accept things I couldn't change, I didn't like people, I started to despise my life, to include most people who had a part in it. Then, last week, the post about Kaitlyn. Why would I read it? Why would it move me to tears? Why did I write to you? I believe that God is speaking to me through Kaitlyn... talking to me and teaching me that there are FAR more important things. Letting me know what is and isn't important. Proving to me that what I thought were hard times and obstacles were really nothing at all."

"What I find remarkable is that I have opened dialogue over the last few days with God. Asking about Kaitlyn, why these things happen, etc. So my comment earlier about her being my Guardian Angel and her saving me... well, that wasn't just talk. Your young daughter took an almost 40-year old grown man from being afraid to talk to God to being a chatterbox with the very same God!"

"I can only hope that I will make in 80 years the impact that Kaitlyn has made in her life."

"Kaitlyn has taught me more in these past months about life than anyone in 35 years."

"Your family's story and the example you have set through this blog have given me a whole new perspective for my daughter- one of living for each day, appreciating the moment, and leaving the "what ifs" at the feet of our Lord."

"I stumbled upon your blog by complete accident. I am 25 and from Scotland... the other side of the world. I believe I was meant to come across this blog for a reason. I've just undergone major surgery on my leg after a car accident that nearly took my life. I have been feeling down and depressed about it all & think I was mean to see this page to put things into perspective. I feel ashamed that I have been feeling hard done by and felt sorry for myself when your little girl shows such strength every day and you guys are beyond strong."

"My life is literally changed for the better by your sweet, courageous, beautiful daughter. You see, before a friend posted your blog on Facebook, I wasn't sure if I believed in God. I wanted very much to believe, but I had trouble surrendering myself fully to the notion. Kaitlyn's story has strengthened and solidified my belief in God. I know in my heart that God sent her here to be His messenger that He is real.... I hope you'll whisper heartfelt thanks to Kaitlyn for changing my life, for making me a better mom and to my sweet son and for proving to me the presence of God in my life."

 "I know you said she has only ever spoken four words but believe me she has spoken more -- She has said to me "wake up and be the person you want to be. Start now and don't wait. 

"She has challenged me to be a better person"
 

I was overwhelmed and so blessed to be her mom and her voice. God works for the good of those who love him, who have been called according to his purpose. It doesn’t always mean that the things God works on are “good’ things in our minds but he can turn those things into something beautiful IF WE JUST LET HIM.

Now when I read that verse I think of the hard times. The difficult times. And I trust that because I love him, he will work those situations for good. It won’t be easy but I know that when I look back, I will be able to see HOW he was working for good in my life. So if you are struggling with anything right now, let God in and ask him to use your situation for good and be willing to let him in.

Me and Cole, now 3 1/2 yrs old

Kaitlyn Kay Bourgeault passed away peacefully at home on March 22nd, 2012. Here is her blog if you want to read more about her and our family.  


In God’s everlasting love,
Deanna Bourgeault

Monday, January 27, 2014

Hindsight

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

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.