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My name is Claire and I'm 12 years old and in 6th grade. I love horses, nature, music and playing the piano and guitar. I have a kidney & liver disease called ARPKD/CHF that I was born with and 2 years ago my friend Jeff gave me one of his healthy kidneys. Now I am stronger and feel better thanks to him and his super kidney! My liver disease is still a problem but so far I have not needed a liver transplant and hope I never will. I am sometimes afraid of what my future will be like but know that God is in control. He has been with me through a lot of surgeries and is my strength!
Claire was born on March 16, 2001 with Auto Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis (ARPKD/CHF) a rare genetic kidney & liver disease affecting 1:20,000 newborns. Nearly half of all babies born with ARPKD/CHF do not survive infancy. For those who do survive, the disease progresses to eventual kidney failure and transplant, and life threatening liver complications that can also require transplantation.
On December 27, 2010 Claire had a bi-lateral nephrectomy at Children's Hospital of Wisconsin to remove both diseased kidneys. They measured nearly five times the size of normal healthy kidneys and were filled will thousands of cysts. She also received a blood transfusion and was put on dialysis and three days later, on December 30, 2010 Claire received the precious gift of a healthy kidney from a friend of our family. Since her transplant Claire has grown 3" and gained 38 lbs. She's now in 5th grade and loves horses, playing the piano and being on the girls basketball team.
Claire's liver has now been the focus of her ongoing care. She has Congenital Hepatic Fibrosis, or extensive scarring in the liver which restricts the blood flow and causes several complications with portal hypertension, varices (enlarged veins) in the stomach and esophagous and issues with her GI tract. In August 2010 an upper endoscopy revealed one very large vein at the base of her esophagous that required banding to prevent an internal GI bleed. She'll have ongoing endoscopies every few months to monitor this and we pray she will NEVER need a liver transplant.
Claire was also born with a cleft lip and palate and has undergone 6 major plastic and reconstructive surgeries and 1 bone graft since the age of 4 months. Each surgery was a risk due to her compromised kidney function but she always pulled through even the most serious complications.
We are so grateful to other parents of ARPKD/CHF children for paving the way and advising us through difficult decisions. Just 10-15 years ago, most children like Claire did not survive infancy. And we grieve with those families who have lost their babies to this awful disease. We are hopeful that with ongoing advocacy, education and funding for medical research, this disease will have specific treatments to improve the quality of life so that all children born with ARPKD/CHF can live long enough to receive the life saving gift of organ transplantation. We have already made great progress toward reaching that goal and I'm certain we'll see it in Claire's lifetime.
Thank you for joining us on this journey and for holding Claire in prayer always!
- Frank & Linda Bevec (262) 657-9564