‘It was sad each time a finger became useless’
(2 of 4)
“I knew that some kids with EB would die young, so I was always concerned. But I never wanted Weston to miss anything, worrying that it would be his last school party, last band concert, last time bowling.
“Some kids with EB went to camp, but I secretly was scared to send Weston. I’d always offer that he could go if he wanted, and make new friends. But he would say that he already had friends. And he did.
“A big challenge for him, and for us to watch, was how he gradually through the years lost the ability to do some things. Like after the cancer surgery on his foot in 2016, he had to be in a wheelchair. He never walked again. He didn’t get to drive any more or continue college. Then his fingers started curving and scarring to where he couldn’t play his Xbox. My husband, Chris, had to modify Weston’s mouse so that he could play games on his PC, and he needed a foot pedal to help do things on the keyboard. It was sad for him each time a finger became useless.
“Weston was in a lot of pain, and we really couldn’t do a thing about it.”
— Dana Zucha
Related:
• Rare skin disorder never-ending battle
• ‘Missing him is such a sad thing’
• Taking care of son ‘best job I ever had’
