CINCINNATI (AP) — Shane DiGiovanna has spent every one of his 14 years grappling with an incurable skin disease and hearing loss. And for almost that long, the Ohio teen has looked to Neil Armstrong — the first man who walked on the moon — as his hero and an inspiration for becoming an aerospace engineer.
Armstrong's death last month at the age of 82 means Shane will never realize his dream of meeting his idol and fellow Cincinnatian. But he will attend Armstrong's national memorial service in Washington on Thursday at the invitation of the astronaut's family. They learned about the teen after he spoke to Apollo astronauts Eugene Cernan and James Lovell and others at an event last month announcing the Neil Armstrong New Frontiers Initiative memorial fund at Cincinnati Children's Hospital Medical Center.
The eighth-grader — a patient treated there most of his life — told the audience he realized at the age of 5 that he probably couldn't "withstand the rigors of launch and re-entry and stuff like that like Neil Armstrong because of my skin condition" and decided that designing spacecraft for astronauts would be "the next best thing."
Shane was born with a rare skin condition called epidermolysis bullosa, which creates abnormally fragile skin that constantly blisters and tears. The condition requires him to have large parts of his body bandaged to cover the wounds and painful surgeries on his hands because his fingers web and curl inward.
Some hearing his remarks at the hospital event told Armstrong's family that the teen seemed to embody part of a statement released at Armstrong's death, family spokesman Rick Miller said. The statement said the family hoped Armstrong's life "serves as an example to young people around the world to work hard to make their dreams come true" and "to be willing to explore and push the limits."
Those who have met Shane don't doubt he fits the bill. Lovell, who along with Cernan was quizzed by Shane about details of their missions and the future of the space program, told the audience he was a little embarrassed because he thought Shane probably knew more than he did. The Apollo 13 commander added that if the teen and he had competed for flights "way back then, I'm sure that I'd still be sitting down watching him fly."
Shane, who was going to the service with his mother, said Tuesday that he is proud to have a chance to honor the man "whose courage and skills I've admired since I was really little." He also hoped to meet some of Armstrong's colleagues and family.
"I want to tell them how sad his death is for all of America," Shane said. "And I would like to ask them more about him."
Shane's mother said he has been fascinated by space since he was 4 — not long after he got his first cochlear implant and began to hear for the first time and speak.
"His first word was airplane," Patsy DiGiovanna said.
While he is independent — attending school and absorbing everything possible on space and physics toward his goals of becoming an aerospace engineer and an astrophysicist — he has trouble using his hands and cannot open a heavy door because the friction would tear his skin.
"I think my focus on achieving my goal to work for NASA helps me deal with the pain," he said.
He has been impressed by how "down to earth" the astronauts he met have been.
He said Cernan "loved it when I asked him what he thought when Jack Schmitt told him as they walked on the moon that he had found orange soil. He was funny. He said he first thought Schmitt had been sucking in too much oxygen."
Shane wishes he could have questioned Armstrong.
"I really would have liked to have asked him about the challenge of landing the lunar module on the moon with less than 30 seconds of fuel left," Shane said. "That was impressive."
