For the first seven months of her life, Kinsey was a perfectly normal baby. When her arms and legs suddenly began to swell, her parents learned that Kinsey was in kidney failure.
Kinsey’s mom, Holly, said the family was devastated when they learned of their daughter’s diagnosis of atypical hemolytic uremic syndrome, or aHUS, and cardiomyopathy. Doctors originally gave Kinsey a life expectancy of less than a year and began experimental treatments.
Part of Kinsey’s treatment plan, which required her to stay in the hospital for more than three months, included a kidney transplant, which was made more difficult because her veins and arteries had blockages throughout. Thanks to doctors at UF Health Shands Children’s Hospital, the transplant surgery was successful.
Kinsey’s long recovery had some unique highlights – such as the decorations and presents that were placed in her hospital room by Child Life specialists on the one-year anniversary of her transplant.
At the time of her diagnosis the disease was fairly new. Holly said the disease is still very rare and they have a lot to learn, but a new medication has been introduced to help with aHUS. Kinsey currently receives this medication via infusion every three months.
Today, Kinsey is 14 years old and her parents consider her a miracle. Doctors agree that she has prevailed despite the tough statistics associated with her disease. Kinsey enjoys studying math, but mom says she does better in science. She also loves Disney, swimming, singing and dancing, her iPad and adult coloring books.
“We credit God for saving Kinsey’s life by using the doctors at UF Health Shands Children’s Hospital,” said Holly. “We know how he used all of the doctors and staff to keepher alive, and keep us close to home.”
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