Wednesday, March 11, 2009

Terrible News!

First Olivia is not doing well today and for the past few days. She has been terribly twitchy and we are not sure why. It started out with her complaining of pain in her foot. We are not sure if she twisted it wrong or if it's neurological pain. This afternoon her twitching became much worse and we knew we had to take her in to the hospital. We called the neurologist to try and get a direct admit rather than going in through the ER. I knew something was up when our neurologist called us back instead of the on call neurologist.

Olivia has tested positive for a terrible genetic disorder called POLG1 or Alpers' Disease. Most of the children do not live past age 10. It's a very progressive and degenerative disease. We are also worried because she has been complaining with her last few flare-ups of not being able to see and blindness is one of the possible effects of this disease. We are just so upset and sad for her.

We also found out that she apparently has some sort of a defect in her mitochondria that they have never seen before. As in EVER. No one else in the world has it because they have never seen that mutation before. I'm not sure yet what all of that means.

We could use prayers for Olivia and for our family tonight. She is at Helen Devos Children's Hospital. They are starting phenobarbital to try and stop the twitching/seizure activity.
I will keep you updated as we know anything.

There is a link about her disease here.

7 comments:

The Fritzemeiers said...

Kelly, I am so sorry and this is devastating news. I still love what you have so aptly named your blog: Olivia's HOPE. I pray for you to keep your hope, and for the comfort you and your family need.

Anonymous said...

Oh Kelly and Rick,
We are so sad to hear the news on little Olivia. We will continue to pray for her and you all. Stay strong and keep your faith.
We are so sorry that you have to go thru all of this.
We send all our love to you all
Love Aunt Pam and Uncle Mel

Anonymous said...

Rick and Kelly:
I wish I had something to say that would help right now. All I can say is that I am praying for ALL of you. I breaks my heart to think about Olivia in a hospital bed. I prefer thinking about her with a great big smile on her face! I truly wish I could do more than just pray - but pray I will that the drs. are able to help Olivia.
Love, Mrs. Gruppen

Anonymous said...

Rick & Kelly & family,
I am praying for all of you, for healing for Olivia, for you to all feel God's presence even in the midst of this news. We miss Olivia here at school and can't wait to see her smiling face once again:-) In the meantime, we will keep on praying, Mrs. Schipper

Anonymous said...

Rick, Kelly & family,
Praying for all of you, healing for Olivia, and that you all will be able to feel God's presence even while facing this latest news. We miss Olivia here at school and can't wait to see her smiling face once again!! In the meantime, we keep on praying!!! Mrs. Schipper

Anonymous said...

dear olivia i miss you my family is praying for you and your family. today at school we made chicca chicca boom boom soup. it was good. (if you like veggies...yuck....) your friend...
cora sharp

Courtney Kay said...

paying for you all!