First Day Of School Brings New Hope For
Kindergartener With Life-Threatening Genetic Disease
Luke Sclater-Booth has already beat the odds— living with ARPKD.
(Kansas City) March 12, 2006— He’s a typical 5 year old boy - playing with friends, riding his bike and getting ready to start kindergarten this fall. But Luke Sclater-Booth is also different from the other kids. He takes 11 medications a week and tires easily. He’s small for his age and struggles with dehydration and high blood pressure. He’s facing a kidney transplant in the near future. His dad plans to be the donor.
Kirsten and Stuart Sclater-Booth had never heard of ARPKD until their son was diagnosed with the disease, while still in the womb. PKD is the world’s most common life threatening genetic disease. For some 600,000 Americans with PKD, fluid-filled cysts grow on the kidneys. Over time, these cysts get bigger and multiply. Most PKD patients will suffer kidney failure. Their options are dialysis or a transplant. There is no treatment or cure for PKD.
Autosomal Recessive or ARPKD is far less common, affecting 1-in-10,000 at a far younger age, including newborns, infants and children. About 40 percent of children born with ARPKD die within a month, and doctors predicted Luke would be one of them.
After having Luke, Kirsten and Stuart learned they both carried the ARPKD gene. They faced a 25 percent chance that any child would have ARPKD. Scary odds, considering how few babies with ARPKD survive. Luke already had an older sister Eliza and about two years ago his parents welcomed another baby, Charlie. Eliza and Charlie do not have ARPKD, but both carry the gene and could pass the disease on to their children someday.
PKD affects more people than cystic fibrosis, muscular dystrophy, hemophilia, Down syndrome and sickle cell anemia — combined. PKD is widespread, but relatively unknown.
Kirsten and Stuart want to help educate other parents about the possibility of having a child with ARPKD. They organize a team for the Walk for PKD, and Kirsten heads up the ARPKD Chapter of the PKD Foundation with another mother, Julia Roberts of Atlanta.
The not-for-profit PKD Foundation is the only organization, worldwide, dedicated to finding a treatment and a cure for this devastating disease. For more information about PKD and the PKD Foundation, visit www.pkdcure.org or call 1-800-PKD-CURE.
To schedule an interview with the Sclater-Booths or other PKD patients and experts in your area, contact PKD Foundation Media Manager Jennifer Robinson at (816) 268-8493 or jenniferr@pkdcure.org.