Photos: Boy's rare disease means 'our family is always together'


From left, brothers Joey Kisielnicki, 5, and Sean Kisielnicki, 7; cousin Sara Trott, 8; father Brian Kisielnicki and brother Jude Kisielnicki, then 8, eat a birthday dinner for cousin Abby Trott, 8, bottom center, in grandmother Pam Noel’s Hopewell Township home Wednesday, June 7, 2017. Noel’s house is adjoined to the Kisielnicki family’s, and she helps with the children’s homeschooling. Sean Kisielnicki, 7, is the second-youngest of six children in his tight-knit family, who live on eight acres in Hopewell Township with a large garden and a menagerie of animals. Sean is diagnosed with Hunter syndrome — a terminal genetic enzyme deficiency that affects 400-500 people in the U.S. and that, for Sean, brings an array of accompanying conditions such as autism, attention deficit hyperactivity disorder and sensory processing disorder. The Kisielnicki family, whose children range in age from 5 to 15, have structured their lives around caring for Sean, whose high-energy presence requires constant supervision and who receives weekly in-home enzyme replacement therapies.

Chris Dunn, York Daily Record

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