Kaitlyn's Korner: Live in the Moment

Tuesday, March 20, 2012

Live in the Moment

Kaitlyn is about the same as she was yesterday. We are blessed with another precious day with her!

11 comments:

AnonymousMarch 20, 2012 at 5:44 PM
God bless your wonderful family and precous little girl! Love to you all! She is such a fighter :)
ReplyDelete
Replies
DyanMarch 20, 2012 at 5:46 PM
Thinking of you all! Thank you for the update!
ReplyDelete
Replies
UnknownMarch 20, 2012 at 5:46 PM
She is such a little fighter! I have been checking for updates all day. God bless Kaitlyn and your family.
ReplyDelete
Replies
Paul TomaykoMarch 20, 2012 at 5:47 PM
Thank God for Kaitlyn, and for another day with her. As always, sending our love and prayers for Miss Kaitlyn and all of you!
ReplyDelete
Replies
AnonymousMarch 20, 2012 at 5:49 PM
Deanna, Chip, and family,
I'm praying for your strength at this time, and wishing and praying hard that Katilyn goes in peace.
ReplyDelete
Replies
AnonymousMarch 20, 2012 at 5:55 PM
I've been thinking of your family all day. It is difficult and sometimes impossible for us to understand, but God has a plan and is in control. Still praying! Shannon
ReplyDelete
Replies
AnonymousMarch 20, 2012 at 6:52 PM
Praying for comfort and strength! She is a beautiful little girl!
ReplyDelete
Replies
AnonymousMarch 20, 2012 at 7:20 PM
You have been in my thoughts all day every day for the past week. :) Praying Kaitlyn is resting comfortably and in no pain!!

sending love your way.

Stacey in VA
ReplyDelete
Replies
AnonymousMarch 20, 2012 at 7:51 PM
Wow! What a precious little angel! I am praying for you and your family. May Kaitlyn's journey as she crosses over be peaceful, and may your family feel the awesome power, presence, and comfort of our God.
ReplyDelete
Replies
AnonymousMarch 20, 2012 at 7:58 PM
Thinking of you all everyday. Know you all treasure your time...

The McLaughlin Family
Sydney, Australia
ReplyDelete
Replies
AnonymousMarch 20, 2012 at 9:30 PM
I lift my eyes to the hills. From whence does my help come?
My help comes from the Lord who made heaven and earth."

May God's grace be on Kaitlyn and her family.

I left her and you up in your time of need and know that God is in control and one day we all will understand.

She has truly been a blessing to all of us who have come to know her.

God Bless!
ReplyDelete
Replies

About Niemann-Pick Disease

Niemann-Pick Disease is a lysosomal storage disease that affects metabolism and is caused by genetic mutations. In order for a child to have Niemann-Pick Disease, both parents must be carriers of a genetic mutation causing Niemann-Pick. There are three types of Niemann-Pick Disease, Types A, B and C.

Kaitlyn had Niemann-Pick Disease, Type A, the most severe of the three types. She lacked an enzyme called acid sphingomyelinase. Since she didn't have this enzyme, her body couldn't get rid of sphingomyelin. Sphingomyelin has nowhere to go so it accumulated in her cells, eventually causing cell death and the malfunction of major organ systems.

Those with Type A typically live to be only 2 to 4 years of age. There are approximately 1,200 cases of type A and B worldwide with the majority being Type B. There is currently no treatment or cure for the disease. When Kaitlyn was alive, she was 1 in 5 in the United States with Type A.