"Just Believe
in Me"
When Carlos Silva, age 17,
traveled alone from his home in Portugal to attend Camp Knutson's program
for children with severe skin disease, he was fulfilling a dream. Carlos
lives with Epidermolysis Bullosa (EB), a rare disease characterized by
chronic, painful blistering. The slightest touch can cause severe
blistering, inside and outside the body. Living in isolation and with
constant pain, Carlos read about the camp and looked at pictures on the
camp's website while he dreamed of going to Minnesota.
Kari Fedje-Rasmus, a Camp
Knutson volunteer escort volunteer, met his flight and wheeled him to the
camp's gathering spot in the terminal. There, for the first time in his
life, Carlos saw another child with his disease. In fact, there were several
gathered there, and some of them were girls. "Do girls get EB, too"? he
asked.
Soon it was time to travel to
camp by bus. The driver raised Carlos in his wheel chair into the bus via an
elevator. Once aboard, he needed to transfer from the wheel chair to a bus
seat. Because EB has left Carlos without feet, he must maneuver relying on
his upper body. A physician on board offered to lift him. Carlos declined
the help, saying softly, but firmly, "Just believe in me." He completed the
transfer on his own.
At camp the children were given
the opportunity to make drawings which would express what being at camp
meant for them. Although Carlos' fingers are only small stubs, he draws
well. Carlos made a drawing of himself, asleep in his bed at camp, his body
wrapped in the signature head-to-toe bandages of EB. There is a smile on his
face as he dreams. In the dream balloon over his Head, he is standing with a
girl, also covered with bandages, and they are smiling together under a
rainbow.
Thanks so very much to all the
airport volunteers who made the dream of attending camp possible for Carlos
and for all his new friends.
