LOS ANGELES (CBSLA.com) — It's Wednesday evening in the occupational therapy kitchen at Children's Hospital Los Angeles.
Kids come wearing backpacks and feeding tubes for a meeting of the CHLA Supper Club.
There's no champagne, no china, no linen napkins. Instead, they play with food.
But this club is more than fun with food. For these kids, it could be a matter of life or death.
"He cannot survive on what he is eating," said Jose Gutierrez of East L.A., whose son Marley was born with intestinal problems that landed him on a feeding tube soon after birth.
Now at 8, doctors say he should be able to eat, but his father says he isn't.
"He just lick everything, smell everything, but he don't want to swallow," Jose said.
Dillon Hernandez, 7, of Pomona also struggles to eat. His big brother Alan is forever trying to coax him.
Like Marley, Dillon has needed a feeding tube since he was 2 weeks old.
"These kids have no conscious memory of the early illnesses that landed them here," registered dietitian Allison Abel said. "But their bodies haven't forgotten the trauma caused by trying to eat in their first few days of life."
The challenge now is trying to get the kids of have a more positive relationship with food.
Therapists support them as they acclimate to sights, smells, textures, what food feels like in their fingers and their mouths.
Also important is the chance to feel at ease with kids their own age.
Jonathan Bautista's mom said that at school in Glendora, sometimes he feels like a monster.
But at the supper club no one's alone.
Still, Dillon's mom Liliana Hernandez hopes the time will come when he won't need this club any longer. And he won't need his backpack.
"One day, he can be free," she said.
for more features.