“We don’t do this very often,” said Alison Westfall ’02, standing before a feature writing class on campus Friday afternoon. Wringing her hands and giggling nervously, she and husband Shaun ’02 calmly and politely answered students’ questions about their son Carson.
Carson has cystic fibrosis. He is 3 1/2 years old.
After the Q-and-A, which addressed everything from what it’s like to have a child with a disorder (by now, very routine) to the possibility of a cure (many drugs are in experimental stages, some of which address the root causes of the disorder), Shaun and Alison showed a video of Carson; what it’s like to be 3 and have cystic fibrosis.
Watching the video, their faces lit up. They were as enraptured with the activities transpiring on the screen as the rest of the class, as if they were seeing it for the first time. Shaun and Alison watched Carson on his mini-bike, tearing across the kitchen they cook in every single day, as though he was racing the Tour de France — and winning. They smiled as he danced in the living room and their eyes clouded up as the screen flashed images of him in the vest he has to wear for 50 minutes every day that vibrates with such force it knocks the mucous from his lungs. “It’ll knock the wind out of you,” Alison said.
“Our counter looks like a chemistry lab sometimes,” she continued, as we watched little Carson unscrew the cap from a bottle of digestive enzyme he then sprinkled on his applesauce; another part of their routine.
The film clip drew to a close and the young couple collected their things, said their goodbyes and made their way out the door, headed to UD Arena to set up for the Carson’s Crew’s largest annual fundraiser, Flying Towards a Cure.
This year, the event raised more than $21,000 for the Cystic Fibrosis Foundation and attracted a crowd of 142 people, up 20 from last year. Donations can be made here. Learn more about Carson’s Crew at www.ccrew.org.