Feeling Lucky in Wisconsin

Our daughter Claire celebrated her 8^th birthday on March 16, which is the day before St. Patrick’s Day.  We wanted to do something special this year to celebrate the life she lives with ARPKD/CHF and help the Alliance at the same time.  Since March is national kidney awareness month and Claire’s birthday we thought of selling shamrocks for a dollar at area businesses with the help of family and friends.  We created happy little “smiling shamrocks” with information about ARPKD/CHF and the Alliance leaving a place at the bottom for patrons to sign their name. They made great decorations for the month of March as many people hung them in their place of business or office to increase awareness and show their support for Claire and our efforts.  Our goal was raise $500 and to date we‘ve distributed all 500 shamrocks and are still collecting them until the end of the month.  We had wonderful support from family and friends in the area and out of town. A new Irish pub and restaurant opened on St. Patrick’s Day and I had about 50 shamrocks left over. I took them to the manager along with a photo of Claire and he was more than happy to put them out for their grand opening day.

Our Veterinarian and friend Maggie Hodge-Regner, pictured here with Claire and her brother Frankie, was the first person to respond to our initial email announcing the shamrock sale fundraiser.  She and her staff at the clinic quickly sold 50 shamrocks, and requested 50 more.  They raised well over $100 as many patrons generously gave more than $1 each.  Claire was surprised when she walked into the clinic and saw all the shamrocks hanging in the reception area along with a photo of her and her dog “Charlie” framed and sitting on the reception desk.  Her face just lit up and I think she realized then just what our fundraising efforts were all about…making a difference!

A lot of people know Claire in the neighborhood, at school, and at church.  But few people know what her life, or any child’s life is like living with ARPKD/CHF or what lies ahead for any of them as the disease progresses.  Increasing awareness is the necessary first step to connecting people with the Alliance and with children and families like us so they can learn more about the amazing progress this organization has made with advocacy, education and research.  And that can be done by reaching one person at a time.  Every shamrock sold represents another person who is aware of ARPKD/CHF and has made a difference. 

Claire is enrolled in the medical research study at the National Institutes of Health and will be there again this summer for a week-long stay of extensive testing, exams, and consultation with a very dedicated team of doctors and researchers who are by far the best in the world when it comes to understanding this disease.  The NIH research is one of many projects funded by the Alliance, and we are truly grateful to say the least.  Currently, Claire has about 38% kidney function and an enlarged liver along with portal hypertension.  We’re told that she’s about 2-3 years away from a kidney transplant, and hopefully her liver will remain stable enough to continue functioning.   She takes numerous medications daily and has routine labs done every 2-3 months.  She seems to lose about 5-10% function a year, but there were a couple years of little or no change.  She’s been through a lot, most of it she thankfully doesn’t remember.  She spent 54 days in the NICU and was hospitalized twice for sepsis.  She’s had five major plastic reconstructive surgeries for a cleft lip and palate which is unrelated to the disease, and she’ll have another this summer.  She remains a vibrant and active little girl who loves life and hopes to be a veterinarian or a farmer with lots of animals when she grows up!

We’ll definitely do the shamrock fundraiser again next year.  Initially, I sent out emails announcing the fundraiser to family and friends with a link to the public service announcement on YouTube.  I followed up by mailing or hand delivering the shamrocks along with a letter from me and Claire, Alliance brochures, and an envelope for collecting donations.  Anyone interested in participating in the shamrock fundraiser next year can let the Alliance know and we’ll provide all the materials.

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