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 7, 2012

Not What We Expected

Kaitlyn's jaundice has gotten worse. Unfortunately, this is not a virus or infection that can be fought off. Her liver isn't working the way it should so bilirubin is getting trapped inside her body, making her eyes and skin turn yellow. The pictures below show her jaundice progression from Sunday until Today (Wednesday).

Our Cutie Pie (Sunday)










Sweet girl resting well (Monday)
You can see the yellow in her eyes (Tuesday)
Big difference (Wednesday)
Today, Stephanie, RN was surprised at how much Kaitlyn's skin and eyes changed from yesterday. Not in a good way. There isn't anything we can do, other than use lactulose to help her get rid of more waste that is in her system and to cut back on food so her body doesn't have to work so hard.












What we have been told is that we could possibly see bleeding as fluid puts pressure on her blood vessels. Her blood vessels could rupture. She could go into a coma, etc. Nothing good.

Still a hint of a smile on Monday









From the very beginning of our journey with Niemann-Pick Disease, we were always told that the neurological aspect would  take her and not a failure of an organ. Obviously the storage from Niemann-Pick disease is causing her liver to fail but we didn't anticipate this happening.

Our hospice nurse and friend Stephanie, RN (Tuesday)









We don't know how much time we have with her but this time it's different. This isn't something that is going to go away. We can't "fix" it and have her with us for more time, like giving antibiotics for an infection. 

Tuesday








Our priority is and always has been to let Kaitlyn have the greatest quality of life possible and to do whatever we can to help her along the way in fighting this disease.

Today, Kaitlyn had blood drawn so we can get more information about what's going on in her body. We know that it won't change anything but having the information will help us no matter what.We really had to push for Kaitlyn to get the blood work done. Hospice didn't want to do it cause it wouldn't matter what the blood work came back with but in our minds, knowing what is going on inside her body, what her liver levels are and bilirubin, can help us make better decisions on how we take care of her and also for the purpose of Niemann-Pick Disease Type A research. We should get the results soon and if there is anything significant to report, I will post again.










We are praying for strength during this time and that when she is ready, she will go peacefully.

31 comments:

  1. I'm so very sorry to hear this. I will continue to pray for peace and comfort for sweet Kaitlyn.

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  2. Not a day goes by that I don't think about and pray for you, beautiful Kaitlyn and your family. Ever since I started reading and following your blog, my little girl and I say little prayers throughout the day and at bedtime for your family. Kaitlyn has touched my heart in so many ways and I strive to be as good a mother as you! Sending love and prayers from Nashville. God Bless

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  3. You guys are always in our thoughts and prayers. What an amazing little girl you have, it's obvious through all of the posts who she gets that from :) Love to all of you.
    Ben and Sarah Borgmeyer

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  4. Thinking of you guys always. May God take her peacefully when he is ready. Praying for comfort and tranquility for all of you as the days get hard. Good job demanding the blood work! You know what you need to continue on this journey and no one should question your requests at this time. Keep up the good work. You guys are an inspiration.

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  5. Deanna,

    Please know that Kaitlyn has touched me, in every aspect of my life. Everyday I check your blog for updates, praying inside that there will not be a new one for fear of reading that your beautiful Kaitlyn has earned her angel wings. I read each post mesmerized by how courageous you and Chip are, how breath-takingly strong. I strive to be the parent that you are, to share your grace and wisdom with my children & the children that I teach.

    Even though I will never meet Kaitlyn, I love her to the very core of my soul. Thank you for sharing your journey with the world. Know that Kaitlyn has touched so many lives. I pray for comfort, yours and hers. I pray that in her sweet dreams she is laughing and playing with the sun on her face and the wind blowing through her hair.

    All of my love to you, always.

    As always, song lyrics ease my heart during troubled times, these are a few lines from “For Good” from Wicked.

    I've heard it said
    That people come into our lives for a reason
    Bringing something we must learn
    And we are led
    To those who help us most to grow
    If we let them
    And we help them in return
    Well, I don't know if I believe that's true
    But I know I'm who I am today
    Because I knew you

    Who can say if I've been changed for the better?
    But because I knew you
    I have been changed for good

    It well may be
    That we will never meet again
    In this lifetime
    So let me say before we part
    So much of me
    Is made of what I learned from you
    You'll be with me
    Like a handprint on my heart
    And now whatever way our stories end
    I know you have re-written mine
    By being my friend...

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  6. Your sweet Kaitlyn and your whole family has been in my prayers ever since I first found out about your blog two months ago. I pray peace and strength for you as you continue to love on your sweet girl. May God grant you wisdom in knowing the best ways to care for her in whatever time He blesses you with before He calls her home to rest eternally in His love. I cannot even begin to imagine what you each are going through--but know that your sweet precious Kaitlyn has helped me to love on my own little boy differently and with even more purpose than I ever would have sought to before knowing about your family and what you have to face each day, hour, minute and second as you love your girl and do the best that you can possibly do for her. Your love and parenting are an inspiration for me. Thank you and God bless you all.

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  7. I echo the aforementioned sentiments and have to add that you are so courageous and selfless to be sharing all that you are going through. I think of Kaitlyn often and pray that for peace and comfort.

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  8. Deanna - I am terribly sorry to hear this. Kaitlyn and your family have been in my prayers daily. Below is one of the prayers Liam and I have said for your family at night before bedtime. It is my favorite prayer for strength.
    Do not look forward to what may happen
    tomorrow; the same everlasting Father who cares for you today will take care of you tomorrow and every day. Either He will shield you from suffering, or He will give you unfailing strength to bear it.

    Be at peace, then. Put aside all anxious thoughts and imaginations, and say continually: "The Lord is my
    strength and my shield. My heart has trusted in Him and I am helped. He is not only with me but in me,and I in Him."

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  9. I don't know you but I just read your story we have some friends that have 2 boys that have NPC,,,I just wanted to say how beautiful your little girl is she has some beautiful hair. We will keep her and you all in our prayers...Hang in there God will carry you through

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  10. My prayers are with you. May you all find the strength at this difficult time. Kaitlyn is an inspiration to all <3

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  11. Love and prayers!!! Strength to you all, and as mentioned before, your Kaitlyn has touched and helped SO MANY people, including me. She is, and always will be, my Guardian Angel! She is loved by many, many people!!! Never forget that! Kaitlyn will never be forgotten.

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  12. Prayers from Salem, Va, for Kaitlyn and for the whole family.

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  13. My heart is just breaking right now. We all have been aware of what is to come but just reading your post made it all more real and incomprehensible. I pray for your continued strength and for God's loving arms to hold Kaitlyn close to him. You are not alone in this. So many people are holding you up in prayer. Much love to you all.

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  14. I learned of your daughter through our Junior Woman's Club and came to the site a few days ago and now am coming back. This story really touches me because my stepfather had liver issues and we had to go through the whole lactalose and billirubin issues. I totally feel for you. My prayers are with you and your daughter during these difficult and trying times. She's a true angel and I hope only the best for her.

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  15. I've read your blog now for a little while, never posted, but I feel the need to do so now.

    My heart goes out to you and your family. Reading your story has proven just how precious our lives all are, never to be taken for granted and enjoy each day, even the tough ones.

    I hope you continue to find strength in the coming days/weeks and know that many many people reading your story are sending you virtual hugs and support.

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  16. Praying without ceasing for Kaitlyn and for you all. May your feel the presence of Jesus during this time, knowing that he is experiencing this right along with you, promising to never leave. Hold Fast to His promise of new life. He makes all things new. Love to you.

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  17. You have always done the right thing by Kaitlyn and will continue to do so. You have our prayers - both for Kaitlyn and peace, and for the rest of the family.

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  18. I am so impressed by your ability to recognize the importance of your sweet daughter's quality of life. May God bless you and your family as you continue through this journey.

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  19. I would like to thank you for sharing Kaitlyn's Korner with us. I have been following Kaitlyn's story since around November 2011. Our daughter Lily was born on August 15th 2009 and was diagnosed with NPD type A shortly after her 1st Birthday.

    We are praying for you and your family.

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  20. I send you my love and prayers for comfort and peace of mind for all of you. I pray that when Kaitlyn is awake, she is not in pain, is unafraid, and receives the pure love being sent her way. I pray that when she sleeps, she is strong, healthy, and free in her dreams to run and play and eat junk food. And I pray for peace for you -- her parents. I pray that you truly know in your hearts that you are giving her the best possible life she can hope for. I pray that you understand how sharing your story has literally changed my life and the lives of so many other strangers who you will never meet. Thank you for your total selflessness -- both to Kaitlyn and to the whole world by sharing your family's story with us. God bless you all.

    Susan, Arlington, VA

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  21. Prayers for peace and strength for you all!

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  22. My prayers are with you.

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  23. I want you to know what an incredible inspiration your sweet Kaitlyn has been to me since I began reading your blog months ago. With each new post, I'm blown away at what God does inside my heart. He has bestowed on you and Chip an unbelievably huge and special task-- to care for one of his most precious and special creations and to use the task to glorify Him. Your blog is changing lives right and left. God is highly glorified. Your faith and courage has helped me to overcome so many of my minor (yet insomnia-inducing (for me)) parenting anxieties and worries with my own children, and I'm so thankful for that assistance. My prayer for you all is that you would have a peace that transcends all human understanding. I pray for you to feel divine wisdom with each new decision you make. I pray that Kaitlyn would be free from all pain and contentedly comfortable. I pray that even now, she is dreaming unimaginable dreams of the reality of heaven and that she has no fear or worry. I pray that she will painlessly and joyfully run into Jesus' arms when He calls her home and that your hearts will be left filled with His love and with only sweet and happy memories of your precious girl to cherish.

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    Replies
    1. God bless you! You put into words what i couldnt, but i am thinking and feeling the exact same things. God bless and comfort Kaitlyn and her entire family! Such a sweetie she is. Thank YOU!

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  24. ((Love to you))

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  25. My heart is breaking for all that your family is enduring. Praying for Kaitlyn and that God will give you peace, strength and grace for the day.

    Debbie Johnson

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  26. Praying for you and your sweetheart! What a beautiful little girl. I can't begin to understand what you are going through and admire the strength you are able to show during this uncomprehensible time. Please know Kaitlyn has touched the hearts of so many and that you are all in our family's prayers and thoughts daily.

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  27. My heart goes out to sweet beautiful Kaitlyn...and your family. I pray shes peaceful & without pain...some place beautiful & healthy...a place so great no one could even imagine!! I pray for your family to be strong...shower her with love & kisses from everyone of us that her story has touched

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  28. Praying for Kaitlyn and your family.

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  29. I love the precious top picture of Kaitlyn looking into her mommy's eyes. God Bless!

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