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.

Wednesday, March 14, 2012

This Little Light of Mine

Last night a community of neighbors and friends joined in front of our house again to hold another beautiful candlelight vigil for Kaitlyn. Along with those near us, numerous people lit candles in their own homes across the country or had a vigil near them in Kaitlyn’s honor. All the love, support and prayers are appreciated beyond words and I’m happy to report Kaitlyn rested peacefully last night.

So many people showing love for Kaitlyn
That's a lot of support
Kaitlyn's candle shining (top right)

It’s simply amazing to see the reach and impact Kaitlyn has had on so many, all with only having spoken 4 words and being only 2 1/2 years old. If spiritual impact and making a difference in others lives were the measure of a full life, then I would say in her case it has been full and then some.  When I think of her and the impact I am reminded of Matthew 5:14-16. 

Shine on little ones!

Matthew 5:14-16 “You are the light of the world. A town built on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven.

I just picture Kaitlyn singing “this little light of mine…I’m gonna let it shine... let it shine, let it shine, let it shine.”  Shine on baby girl, you amaze me and make us so proud!

Kaitlyn did rest well last night and has been sleeping quite a bit over the past few days.  Her skin color has definitely begun returning to normal and even the yellow in her eyes has gone down.  We are not sure what to make of this exactly.  We think it could be that her circulation is not doing as well so the color just isn’t as evident, but right now we really don’t know.  It is nice to see her not so orange though.  

Her color looking a little bit better

Cousin Daniel came over for the vigil too

This morning while bathing her, I noticed her belly button looked more distended than usual.  Changes of any kind prompt a full exam by mommy or daddy, so I quickly checked her over and noticed her belly had a definite fluidy/jello like feel.  Usually her skin rests firmly against her large hard liver, but this time I could press in on what felt like a layer of water under the skin before feeling the liver and if I tapped her belly it had a ripple like jiggle.  The best I could equate it to would be soft jello. This was a sign we did not want to see.  Her little tummy area has ascites, or fluid, accumulating under her skin and this is another indicator of major problems with her liver.  We have started her on Lasix, a diuretic, to try and flush extra fluids out of her body and are holding her feeds until this evening. 

Curly locks and her big blue bow

Again we ask that everyone continue to pray for her comfort, that if the medications can help that they work quickly to help her body rid the excess fluid, and that Deanna and I continue to clearly know what is best and feel comfortable with whatever choices lie ahead.


  1. We continue to keep Kaitlyn and your whole family in our thoughts and prayers. Hoping that Kaitlyn is as comfortable and pain free as possible. She truly is a remarkable little girl!

    Ali Reardon

  2. "Shine on baby girl" I really like that!! Constant prayers for Kaitlyns comfort & peace

  3. So glad Kaitlyn is resting peacefully. Continued prayers being said....

  4. Deanna and Chip,
    Kaitlyn's little light shines now and will continue to in each one of us she has touched. Love and prayers continuing from Houston...

  5. Kaitlyn is in my mind and heart daily. All love to you, Kaitlyn, and those around you. From Salem, MA, Beth

  6. Continued prayers from The Carr family may our Father bring little Kaitlyn peace and comfort I pray that her meds continue to work and also for the rest of your family.
    Bristol Tn

  7. Still praying and thinking of you all each day in Spartanburg. Beautiful curls!

  8. Kaitlyn's light shines so brightly and it will never be extinguished! Shine on baby girl (well said Dad)! Kaitlyn is such a special little girl in so many ways and has forever touched many lives all across the world. With you and Deanna as her parents and her voice, her spirit will continue to touch lives and make a difference. Again, thank you for sharing your family and your journey with us.
    I continue to pray for her peace and pain-free days/nights and for God to continue to give you and Deanna strength and wisdom in the coming days.
    All my love to you!
    Mary in AZ

  9. God bless you Chip and Deanna. Kaitlyn has touched my life in ways I can not express. I think of her often and pray for her daily. As a parent, your strength astounds me. Kaitlyn is such a gift to this world.

    Amy Smith, Red Lion PA
    Mom to Andrea and Nathan

  10. I would've totally lit a candle in my house if I thought I could participate in the vigil that way. My thoughts and prayers have been with Kaitlyn and all of you, though. Those curls with all of the beautiful bows is just precious! She is the best hair bow model ever!

  11. I've lit a candle for her here in Rock Hill. Sending love and comfort to you all.

  12. put you all on prayer chain at church tonight it is amazing how prayer works love and prayers to you all

  13. Loving prayers from Johnson City, Tennessee. Your little ray of sunshine has made me a better Christian. That's one more soul her's has touched!

  14. I pray for comfort for Kaitlyn tonight and every night, and for a bit of rest for you. Thank you so much for sharing yourselves and Kaitlyn with us. She is very, very loved and has a TON of people pulling for her. God bless you all, my Friends!

  15. So humbled to have been among those gathered that night. We continue to pray, offering all of our love and support.

  16. We lit a candle in our house for Kaitlyn, so awesome to be a part of such a powerful and moving time!! Praying for sweet Kaitlyn. Peace, comfort and love to you all.