Claire is an energetic girl who loves horses, nature, art and the piano. She was born six weeks premature with a cleft lip and palate. Three days later, she was diagnosed with autosomal recessive polycystic kidney disease (ARPKD) and congenital hepatic fibrosis (CHF). The prognosis was grim; doctors initially believed she would only live a few days. Claire spent three months in the NICU and gained enough strength to have a trio of surgeries to correct the cleft lip and palate. But the ARPKD causes eventual kidney failure and by age 8, Claire’s kidneys were functioning at only 30 percent. Claire’s mom sought help at Children’s Hospital of Wisconsin and Claire received a kidney transplant on New Year’s Eve. The new kidney has given Claire an increase in energy, and this past year she played on her school’s girls’ basketball team. Today she faces an uncertain future with the progression of her liver disease (CHF), along with other issues. But through every challenge, Claire keeps smiling.
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06/25/2012
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2012 FAD Twitter Feed
Cheer for the All-Stars
- Children's hospital patients and their families are traveling from across the U.S. for the Children's Hospital Association's Family Advocacy Day, July 23-25, 2012. They will tell Congress about the importance of children's health care coverage and health issues. This site will feature a different participating child each week until the event. Leave a comment and cheer on our All-Stars for children's health!
About Family Advocacy Day
- In its eighth year, the Children's Hospital Association 2012 Family Advocacy Day brings patients from children's hospitals and their families to tell their stories to lawmakers on Captiol Hill. Find out more about Family Advocacy Day.
With All Our Might Policy Blog
- Check out our health policy blog With All Our Might. To contribute a blog post as a 2012 Family Advocacy Day participant, please contact Justin Beland at 703-797-6063.
- Disclaimer: The views and opinions expressed in individual posts are strictly those of the author(s) and in no way represent those of N.A.C.H. N.A.C.H. assumes no liability for the information therein and extends no implied or expressed warranty or guarantee of accuracy. The receipt of unsolicited ideas by N.A.C.H. does not obligate N.A.C.H. to keep these ideas confidential, nor does it obligate N.A.C.H. to pay the person who submits them.
© N.A.C.H. 2007
Claire - you are certainly an All-Star to our family!! Thank you for taking time out of your summer to visit Capitol Hill in support of children's health care!!
Posted by: Heather, Dave & Ella | 06/25/2012 at 05:19 PM
Dear Claire,
We are so lucky to have someone like you chosen to go to Washington, DC. You can help tell the important people there all about yourself and the need for good medical care for all children. Thank you for being our All Star!
Have a great trip!
Dr. Pan
Posted by: Dr. Pan | 06/25/2012 at 05:45 PM
Claire,
You are our All-Star at All Saints Catholic School! We are so proud of you and hope you and your family have a wonderful time in DC. We look forward to hearing all about it when you return.
Love,
Mrs. Lesnak
Posted by: Carol Lesnak | 06/25/2012 at 06:01 PM
My Dear Claire, I am so very proud of you!! Just think, you'll be a part of a very important event that will help children all over America! You are and have been our hero and inspiration since day one. I do believe God has a plan for you, Sweetie! You make your family very proud. Bunches of love, Grammie Phyllis
Posted by: Phyllis Brandt | 06/25/2012 at 06:04 PM
Dear Claire,
What an important event you are taking part in. You are an amazing girl and I know will be a great contributor. Have a great time in D.C.!
Many Blessings,
Cathie Carrubba
St. Anne
Posted by: Cathie Carrubba | 06/25/2012 at 09:46 PM
Claire,
I am happy to read that you have been given such a wonderful opportunity! Enjoy your time I DC. I am sure you will gave stories to tell your classmates at ALL Saints catholic School!
Blessings, Dr. Lichter
Posted by: Jackie Luchter | 06/25/2012 at 10:54 PM
You are an A-Star to everyone who knows you! We are so proud of you Claire! Go get em in DC!
God bless,
Chris & Joe Pillizzi
From your St. Anne family
Posted by: chrisp@wi.rr.com | 06/26/2012 at 12:28 AM
Hi Claire,
Congratulations! We are so proud of you. You are an inspiration to so many people. Have a wonderful time in DC!
God Bless you always,
Sheryn Abraham & Manoj Babu
Posted by: Sheryn Abraham | 06/26/2012 at 12:53 AM
Claire,
What a cool opportunity to travel to Washington D.C.! Sharing your story will help so many other children. They couldn't have picked a better All-Star. You are an amazing girl! Enjoy your trip!
Posted by: Stacy Boyce, CHW Social Worker | 06/26/2012 at 08:44 AM
Claire,
I am so proud of you! You are an All-Star and what a great way to finsh an All-Star, 5th grade year! Have a great time in DC with your family. I look forward to hearing all about it.
Love,
Mrs. Wavro
Posted by: Lisa Wavro | 06/26/2012 at 10:39 AM
Claire, Congratulations!! What a great honor for you and a great trip, too :) We hope you have fun and we look forward to hearing all about it when you return. It is so important that we remind the people in Washington how important childrens' health care is and how vital Children's Hospital of WI is to our communities. Have Fun!!
The Birschbachs
Posted by: Kelly Birschbach | 06/26/2012 at 12:34 PM
Congratulations Claire! You truly are an all-star. Enjoy your trip to DC and sharing your stories with everyone you meet! God Bless from a St. Francis Xavier friend.
Posted by: Janice Holderead | 06/26/2012 at 07:00 PM
Hi Claire! Congratulations! You will be a wonderful ambassador to Washington D.C. representing children all over our country. Those United States Congress men and women, lawmakers, and leaders are in for a great treat! If anyone knows how to deliver hope, smiles, determination, fun, and gratitude it is you! So many times you have delivered those things to our school (students and faculty) just by telling and sharing your story. We will keep you in our prayers and YOU have a GREAT time! Shalom...from Mrs. Mindy Woll St. Francis Xavier Library
Posted by: Mindy Woll | 06/26/2012 at 08:12 PM
Dear Claire,
You have been an inspiration since the day I first heard about you from Sister Sandy. I have enjoyed your family stories and adventures and I have admired your courage, strength, determination and faith in God. You are truly a super star and a hero to many of us. Enjoy your time in Washington D.C. Can't wait to see pictures. God Bless,
Paulette Kerns (1st grade teacher St. Francis Xavier School)
Posted by: Paulette Kerns | 06/26/2012 at 08:56 PM
Claire - what an All Star you are every day of your life. You have inspired so many of us at St Francis Xavier when your Aunt Sandy shares stories with us of your fight and success. I am sure you well represent everyone with great pride in Washington. Have fun and enjoy your chance to shine - you were placed here to do that.
Tina Bresnahan
Posted by: Tina Bresnahan | 06/26/2012 at 08:56 PM
Claire...I can only agree with all the comments that have been posted before me. You have and continue to be an inspiration to all. We have cheered with your victories and cried with your disappointments....but never ceasing to continue to pray for your strength and courage! Washington will be so much fun! Please take loads of pictures and post them (then again....maybe your will be on national t.v.!!??!) so that we can all share this honor with YOU!
Mary Beth Esterburg (1st grade teacher-S.F.X. Medina, Ohio)
Posted by: Mary Beth Esterburg | 06/26/2012 at 10:18 PM
Claire, What a wonderful opportunity for you to go to Washington to share your story. God is using you and your family in a very special way! You are remembered in our morning prayers at school every day. We'll anxiously wait to hear all about your trip from your Aunt Sandy. God bless you, Judy Podrasky (St. Francis Xavier School)
Posted by: Judy Podrasky | 06/27/2012 at 12:31 AM
Dear Claire,
Aunt Sandy and I have been friends for MANY years. I keep tabs on your progress and, of course, have been praying for you. What a gift of life and courage you are for many!
Sr. Donna
Posted by: Sr. Donna Mikula | 06/27/2012 at 08:20 AM
Claire, you are a rock star and an all-star all rolled into one! I feel so blessed to have spent some time with you and your family.
XO
Kim Magnan
Posted by: Kim Magnan | 06/27/2012 at 08:54 AM
Claire,
You are such an inspiration! Your Aunt Sandy keeps all of us updated and prayers are sent your way daily! How awesome that you may get a chance to meet our first lady... make sure to get pictures if so :). Continue beating the odds and know that there are so many people cheering for you! God bless you, beautiful girl!
-Amanda Plute-Schlitter
Posted by: Amanda Plute-Schlitter | 06/27/2012 at 08:56 AM
Dear Claire,
What an honor it is to be selected to be a representative for children's health! They couldn't have picked a better role model! You've always been and continue to be such an inspiration to all of us, and we have love watching you grow throughout the years. Have a wonderful time in Washington, D.C.!
~Angela Farkas (music teacher at St. Francis Xavier School)
Posted by: Angela Farkas | 06/27/2012 at 11:30 AM
Hi Claire,
This is Sue Brooks(your Aunt Sandy's friend)and I just wanted you to know how proud we are here at St. Francis for all you've accomplished thru the years. You are such a brave girl and a real example to others of strength and courage. Have a wonderful trip to DC and enjoy your honor. I can't wait to hear about your trip. Give my best to your mother,father, brother and sister,too!
Blessings, Sue Brooks
Posted by: Susan Rohe-Brooks | 06/27/2012 at 03:30 PM
Hi Claire,
I'm so proud of you! You are truly an All Star ... you are an inspiration to so many people. I hope you and your family have a wonderful time in Washington, D.C. I'm happy you will meet Mrs. Obama!
Take Care,
Mrs. Kovacs
Posted by: Kathy Kovacs | 06/27/2012 at 11:09 PM
Hi Clare!
Your St. Francis Xavier, Medina, Ohio Family remains so inspired by your strength and spirit. Enjoy your trip to Washington, D.C.
We will stay tuned for more wonderful Clare stories... You Go Girl!
Karen Carabin
3rd Grade Teacher S.F.X.
Posted by: Karen Carabin | 06/28/2012 at 10:52 AM
Hey Clairey .... you continue to be a true gift from God to our family and one of my two favorite nieces. (Can't make Gracie jealous). You have opened many hearts and inspired many people with your strength as a true child of God. Blessings to you, Gracie, Frankie and your Mom and Dad.
Love you, Aunt Sandy
Posted by: Sandra Bevec | 06/29/2012 at 04:21 PM