“Because scleroderma is a ‘rare’ disease, it often doesn’t get the same level of funding as others,” Skylar H. explains. “My goal is to raise money to help ensure that other families don’t have to lose their grandmothers, other family members or friends to it.”
For her mitzvah project, Skylar H. is marking the milestone with a fundraising project rooted in love and hope. She recently decided to raise funds for the SRF in memory of her grandmother, Kathryn “Kathy” Karson, who passed after a long battle with scleroderma.
“I am doing this in memory of my grandma, who was always full of love,” Skylar says. “As I celebrate my Bat Mitzvah, I want to turn my grief into action.”
Kathy’s journey with scleroderma began, as it does for many, with symptoms that started small but grew increasingly difficult to manage. “Kathy’s hands were the first to feel the effects of scleroderma—specifically, Raynaud’s,” recalls her son Joe H.
As the disease progressed, its impact on Kathy’s day-to-day life became more pronounced. “She was an extremely active person, and she ran and swam regularly,” Joe shares. “Over the first couple of years, she unfortunately had to stop doing both. I think that life change was the hardest part for her in the beginning.”
“We treated Kathy the same, for the most part, as we did prior to her scleroderma diagnosis. We never wanted her to feel disabled,” says Joe. “That said, we certainly were more attentive to her, checked in on her more often, and made sure she felt all the love all the time.”
“We happily found more time in our days to shower Kathy with love and support, both when we were apart and together,” she adds. “There were definitely tough times, but Kathy was a fighter.”
“Watching her go through that struggle showed me how much we need better treatments and, eventually, a cure,” says Skylar. “This is a cause that means the world to me and my family.”
“Our family is passionate about supporting scleroderma research because it is a horrific disease that nobody should ever have to endure,” Joe says. “We hope that there can be a cure for it very soon, so people like Kathy, and families like ours, never have to go through what we experienced again.”
By dedicating her project to the SRF, Skylar hopes to raise awareness and support research aimed at better treatments for people living with scleroderma, and to honor her grandmother whose love and fighting spirit left a lasting mark on everyone around her.
Pictured: Kathy with her grandchildren (including Skylar)
