Summer time Assistance
Window film, more waterpark joy and sun safe strollers, our favorite summer help (so far) has been as unique as the photosensitive families we’ve assisted.
In the past few weeks, Shadow Jumpers has helped cover the windows of a child with XP, sent UV-safe clothing and gear to a newly diagnosed infant with CEP, and surprised a family with an indoor waterpark getaway after a long trip to see a specialist in Detroit.
The Liston family has struggled to obtain a positive diagnosis for their son Greysen's photosensitive symptoms. After years of negative results, they found hope during a visit to Henry Ford Hospital in Detroit, where they felt their concerns were validated by a supportive medical team. To make the experience even more special, Shadow Jumpers covered their travel expenses and treated Greysen to a sun-safe day at the Great Wolf Lodge water park on their way home.
Greysen posing outside of the Henry Ford Health Hospital
The Beierwaltes family faced challenges understanding their son Blake's unusual reactions to sunlight, which began when he was one month old. They eventually learned he had Xeroderma Pigmentosum (XP). Feeling relieved to identify the cause, mother Kendra took steps to protect Blake's lifestyle. They received assistance from Shadow Jumpers to install UV protective film on their home windows, allowing Blake to move safely indoors. Special thanks to EDH FILM GROUP for their outstanding support.
Blake Beierwaltes flexing after a successful window tint to his home
The Nunez family welcomed their baby boy, Logan, who was diagnosed with Congenital Erythropoietic Porphyria (CEP) shortly after birth. New parents Oscrlys and Arturo Nunez began extremely concerned about UV protection and sought help from our friends at the United Porphyrias Association. In response, Shadow Jumpers partnered with the UPA to provide the family with sun-safe clothing, a protective stroller, and resources like blackout curtains and a UV umbrella. We look forward to continuing support as the family prepares to move later this summer.
Oscrlys and Arturo Nunez with baby Logan