When Ryan and Renatta Hultman were expecting their second child, they were filled with hope and joy of what the future would hold for their second daughter. They never expected that it would be a life of excruciating pain and limitations no parent ever expects.
Their daughter, Raquel, was born eight years ago with epidermolysis bullosa (EB), an incurable, rare genetic tissue disorder. The disease affects one in 20,000 children in the U.S. and leaves sufferers’ skin as delicate as tissue paper, leading people who have EB to be called “butterfly children.”
Life is not just frustrating at times for Raquel, but it is also frustrating for her parents who find it unbearable at times to watch their beautiful little girls suffer in so much pain. It also takes a toll on Ryan and Renatta as they have to feed her through a tube for 99-percent of her meals because if Raquel swallows anything harder than yogurt, she risks tearing her esophagus.
Ryan and Renatta have to redress the eight-year-old’s wounds every other day to decrease the risk of infection and to keep her sores clean. She also uses a scooter to get around and is accompanied by a nurse to school every day.
“Last year we had a really bad period where Raquel was just really frustrated. She would cry almost every day and say: ‘Mom and Dad, I don’t want to have EB,'” Ryan explained. “It can be really tough to find the routine that works for your family with EB and for the first couple years, she was in so much pain she would need morphine every other day.
The Hultmans found that routine with the help of the organization and have found a way to bring joy to their daughter’s precious life: On the ski slopes!
“We’re a big skiing family, and Debra Canada helped us get a sit-ski for Raquel so she can join us.”
Head to the next page to see Raquel in action!