Restoring Stability for a Mother Battling Her Photosensitivity
Shadow Jumpers stepped in when Solar Urticaria turned survival into a full-time job
This past summer, Shadow Jumpers was honored to step in and assist a mother living with Solar Urticaria (SU), a rare and debilitating condition to sunlight, that had left her homebound and unable to work. After years of managing her condition, she began experiencing worsening reactions not only to sunlight but also to indoor lighting and electronic screens. In addition to her photosensitivity, she also had to deal with severe allergic reactions pertaining to her Multiple Chemical Sensitivity (MCS) disability. As her health declined, her ability to work disappeared, and she quickly fell behind on rent, car payments, and other essentials while awaiting the results of a disability appeal.
Facing mounting bills and with only a few hundred dollars left to support herself and her disabled daughter, she reached out to Shadow Jumpers for help. After reviewing her situation and verifying her financial documentation, we stepped in to provide immediate financial relief, covering two months of rent, bringing her utilities and other bills current, and supplying her with new UV-protective clothing to help her safely manage day-to-day life indoors and outdoors.
“Since April, my symptoms became severe and unstable,” she shared. “I began reacting not just to the sun but to fluorescent and halogen lights in my own home. Even screens would make my skin burn and my face swell. I’ve had to live completely covered, even inside, to avoid the pain.”
As her condition worsened, she was forced to stop working when she could no longer tolerate exposure from her work laptop. The disability process that followed was long, uncertain, and ultimately unsuccessful, leaving her without income for over two months. “I’ve worked hard my whole life,” she wrote in her request for help, “but the system doesn’t understand conditions like mine. I just needed a bridge to keep my daughter and me from losing everything while I try to recover.”
The effects of Solar Urticaria ripple far beyond the physical. For this mother and daughter, everyday moments, stepping outside, opening blinds, even using a phone, became sources of fear and discomfort. “Most people don’t realize how isolating this can be,” she explained. “Even light through the window can cause a reaction for me. But I still want to move forward, to find care, to create a safe life for my daughter and me.”
Through Shadow Jumpers’ assistance, she was able to stay in her home, regain financial stability, and hopefully, begin planning for the future. The new UV-protective clothing we provided also helped her re-establish some control and comfort in her environment. “I feel like I can breathe again in clothes that also actually fit,” she said after receiving the support and citing a radical weight loss due to other medical complications. “Just knowing that someone cared enough to help us through this, it’s life changing.”
For this family, our support meant more than bills paid; it meant safety, dignity, and hope. Shadow Jumpers exists for moments like this: when a rare condition threatens to take everything, and community steps in to remind someone they’re not alone.