The Vercher Girls(and Shawn too!)

Katelyn, our snow Angel!!!!
Visit www.miraclewishforchiari.com



We hope this page serves as a positive influence to families who are struggling with illnesses. We have met so many wonderful people through our Chiari Journey. We are so thankful for all of the life lessons that this journey has given to us and thank God for every blessing that we have. If not for Chiari/EDS, we may never have been able to appreciate them!

The genetic link between Chiari and Ehlers Danlos is just being established. Finding treatment options is very frustrating. Pain and neurological symptoms is an everyday occurrence for the girls and I.

Katelyn read the book "Sadako and the Thousand Paper Cranes" and it inspired her to start making paper cranes. The little girl in the story was trying to make 1000 paper cranes so that she could get a miracle wish because she had leukemia. The story really touched Kate and that's how the crane making started. Kasie suggested that we sell them to raise money and Kate is calling it "Miracle Wish for Chiari".

Our new site about that is www.miraclewishforchiari.com


Chiari has allowed us to meet several wonderful families who are also affected by Chiari.

We are excited to report that Miracle Wish has been granted a Family Weekend in the Fall, Nov. 13-15 at the Victory Junction Camp in Randleman,N.C. If you are interested in attending, please let us know. The maximum number of families of 32 and it is absolutely free! This is a HUGE accomplishment for a group as small as ours and we are very excited!

Journal

Friday, September 4, 2009 6:34 PM CDT

I can't believe that we haven't updated since June!! It has been so busy. After Katelyn's surgery in January, we've had follow-up visits in Iowa, getting her ready to return to school after almost 5 years out because of her symptoms.

The great news is she had her testing two weeks before school started(no stress there haha)and tested at her grade level and got honors classes. The next week, we went to Iowa and Dr. Menezes agreed to let her wean off of the collar. This was on a Wednesday and school started Monday.

She is now in the fifth week of school. It was so exciting for her to go back to school and be a Freshman!! She came home Monday with a horrible cold and had been coughing all day which made her head and back pain terrible. Her doctor here tested her and she was negative for the flu(thank God) but had to stay out all week because of her weakened immunity and the huge number of kids being out with the flu.

Kellie is doing fair. Her symptoms have been bad but she refuses to have any other surgeries because the tethered cord was so bad for her. I can't say I blame her. Shawn had his fourth birthday party at Chuck E Cheese. I can't believe he is 4!!!!

Kasie is in school and will graduate next year. She has good days and bad days. I think she is going to take a break before going on to grad school. Her degree will be in Psychology. She will be in charge of the sibling program at Victory Junction Family Weekend and is so excited.

We are getting everything ready for the Miracle Wish for Chiari Family Weekend. I can't believe it is getting so close.

We will be going to see Taylor Swift in concert this coming Wednesday night. Katelyn loves her and so do we. Before my "miracle surgery" last September, we arranged for her best friend, Kellie and her friend, to go to Taylor's concert without Katleyn knowing. I didn't want her to worry about me and thought it would be a good distraction. This is before we knew how serious the surgery was. It gave me peace to know that they were having fun and not worrying about me for that little bit of time.

This is the first time that all of us will be going together! Kasie, Kellie and Katelyn have been through so much and they amaze me. They continue to have their goal of a camp for kids with music, horses etc. It's ironic that our family weekend has a Western theme.

My bff Kim and her daughter are coming to the concert. Thank you Kim for always being here for me and sticking with us through the hard times. I will never be able to repay you for what you've done and who you are to me!

Well, we are going to feed the horses. Hope and pray all of you are having pain-free days.

Miracle Wishes,
Leann

Read Journal History

Hospital Information:

University of Iowa Medical Center
200 Hawkins Drive
Iowa City, Iowa 52242-1061

Links:

E-mail Author: theverch@aol.com

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