When 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 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 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 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 conference, which will be held in July 2024 in Georgia. Since the organization is not large enough to qualify for the yearly ExtraGive event in Lancaster, it coordinates several smaller fundraisers such as a 5K race in the spring and a giveaway drawing in the fall.

On Saturday, Sept. 9, Kisses for EB will host a benefit motorcycle and car ride through the Southern End. The ride will begin at Refton Fire Company, 99 Church St., Refton. Registration will start at 8 a.m., followed by the ride at 10 a.m. Riders will return to the fire hall by 12:30 p.m. for food and prize drawings, and those who do not wish to participate in the ride itself are still invited to attend. For more information, visit https://tinyurl.com/butterflyride.