Solanco townlively.com
JULY 26, 2023
SERVING THE LOCAL COMMUNITIES SINCE 1954
VOL LX • NO 14
The butterfly children BY ADRIAN ESCHENWALD
hen Kiba Cedeno was born in January 2015, the lives of his family members would never be the same. Kiba was born with a rare genetic connective tissue disorder that causes the loss of the majority of skin and muscle on his legs, as well as other patches on his body. “When he was born, the doctor said, ‘I hope this isn’t what I think it is,’” said Kiba’s grandmother Dana Cedeno. “It was, and it turned our whole world upside down.” Kiba’s family learned that he was born with epidermolysis bullosa (EB), a condition they had never heard of before. There is no cure for EB; the primary treatment entails wound care and pain management. As Kiba’s family members worked to manage his condition, they realized that there was very little awareness of EB. Few organizations exist that assist families who are affected by the disease. Kiba’s family decided to create Kisses for EB, a nonprofit organization dedicated to informing
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the public about EB and supporting families that have children who were born with the disease. The family operates the nonprofit from its residence in Conestoga. There are multiple variations of EB, but they all share many of the primary symptoms. In the United States, over 200 children are born with the condition every year. It is
As Kiba’s family members worked to manage his condition, they realized that there was very little awareness of EB. estimated that 25,000 people in the U.S. currently live with EB. Children with EB are often referred to as “butterfly children,” due to their skin being as fragile as a butterfly’s wings. Kisses for EB regularly hosts fundraisers throughout Lancaster County, which it uses to help families across the country in a variety of
See Kisses for EB pg 2
Landis Valley Village and Farm Museum reinvents history There’s ancient history. There’s modern history. And then there’s living history. At Landis Valley Village and Farm Museum, history is alive and thriving. A Pennsylvania German heritage site situated at 2451 Kissel Hill Road, Lancaster, Landis Valley Village and Farm Museum is an exploratory learning tool and a portal to the locale’s past. Among its highlights are its interactive nature, craft
demonstrations and volunteers dressed in period garb. “George and Henry Landis envisioned Landis Valley being a Williamsburg in central Pennsylvania,” said Timothy Essig, a museum educator at Landis Valley Village and Farm Museum. “They envisioned this living history museum of Pennsylvania Dutch in southcentral Pennsylvania. Living history is a re-enactment of a previous time period. When you come to Landis Valley and you see these different See Landis Valley pg 8
What’s in your garden? BY ADRIAN ESCHENWALD
The Quarryville Library has scheduled multiple events to offer resources to those with gardens.
Many people tend gardens, from small beds of flowers to full-scale produce gardens rife with vegetables and herbs. But when managing a garden, there are several factors to consider: How do you arrange the seeds for maximum yield? Which insects are helpful in a garden, and which will wreak havoc? To shed some light on common garden-dwelling critters, the Quarryville Library, 357 Buck Road, Quarryville, will host “Insects - Friend or Foe?” on Thursday, July 27, from 6 to 7 p.m. The informational event will feature a presentation from See Library event pg 6
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Kiba Cedeno
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ways. The nonprofit’s efforts have included covering travel costs for trips to the hospital and mailing gift cards to families that have lost a loved one to EB. In the past, the organization has sent Christmas gifts to a child with EB who was admitted to the hospital over the holiday. One of Kisses for EB’s primary goals when fundraising is to grant families an opportunity to attend a biennial conference hosted by debra, an international charity dedicated to researching a cure for EB. In 2022, Kisses for EB raised enough money to send 10 families to the conference in Denver, Colo. During the conference, families attend a variety of breakout sessions that discuss topics such as new drug trials for EB treatment, methods of managing the condition and gadgets that can improve patients’ quality of life. At the 2022 conference, Kisses for EB gave out gift cards to families in attendance. Kisses for EB is currently fundraising with the goal of sending 20 families to the next debra