導讀:相互擁抱能讓人感覺到安全與溫暖,可是對于患有大皰性表皮松解癥的人來說,他們的皮膚薄如蟬翼,日常的輕微摩擦都會使他們受傷,更不用說相互擁抱了。
Hugs make us feel nice, happy, and safe. But did you know that it is possible for hugs to be so painful, in fact, that some people can never ever be hugged?
Two-month-old Kiira Kinkle was born with an extremely rare disease called recessive dystrophic epidemolysis bullosa(大皰性表皮松解癥). If anyone hugs her, or even if a clothing wipes against her skin, her skin develops painful blisters.
“ I cant hold her hand because its continually bandaged. There is no skin-to-skin touch,” said her mother, Kirsti Kinkle.
Every day Kirsti and her husband, who live in Lincoln, California, each have to spend at least two hours a day putting pieces of light cloth around Kiiras fingers and toes before wrapping them in bandages. She has to wear very soft clothes and has to be wrapped in a light cloth before anyone can pick her up.
To make things even worse, there is no treatment for this disease other than wrapping the body in bandages. “Everything right now is just a treatment to improve conditions but not get rid of it,” said Kirsti.
Kiiras older sisters want to be able to play with her, but, at least right now, they cant do anything more than a game of “hide and seek”with her.
If you had Kiiras condition, what sort of things would you be unable to do? Tell us what you think are some good ways for Kiira to have fun when she is older that wont cause her to get blisters.
Vocabulary
extremely adv. 極其地
wipe v. ?擦拭
blister ?n. 水泡
bandage ?v. 用繃帶包扎 ?/n. 繃帶
wrap ?v. 包裹
treatment ?n. 治療
王莎璦改編