When adolescents living with HIV arrive at Sanyuka Camp in Uganda, many carry a burden of isolation. At home, they might be the only one taking daily medication, hiding pills in a pocket or waiting until no one is watching. Missing a dose isn’t only a health risk, it can mean exposing a secret they’ve…
“Camp has lifted her spirits and helped her gain confidence.” When You Feel “Outcast” and “Alone” No parent wants their child to be teased. Cathy Stalinski is among them. But as a young child, her daughter Kateri was often picked on. Kateri’s liver transplant meant standing out—with short “boyish” hair and bloated “steroid belly”—wherever she…
When Your World Shrinks Every parent wishes all the opportunities in the world for their children. But when your child is diagnosed with a life-altering medical condition, or undergoes a solid organ transplant surgery, the list of opportunities begins to shrink. This was true for Delilah. Born with a congenital liver disorder, her childhood revolved…
When Virgina Brake was diagnosed with Celiac disease, her world changed. Her family’s world, too. Like many families navigating autoimmune conditions, the Brakes faced an overwhelming amount of new information, major dietary changes, and a new sense of vigilance. Virginia’s new food restrictions suddenly shaped what she could eat—and how she was included—at school lunches,…
“The camp experience brought back that joy, that spontaneity. It gave Evan independence and confidence that we hadn’t seen before.” – Joanie, Evan’s Mom
“I always just try to keep moving forward. It’s the best thing you can do.” Ellena was born with CLOVES Syndrome, a condition so rare that only around 300 people in the world share it. She had brain surgery at six weeks old. She grew up with a prosthetic foot she calls her “super foot.”…
