"I want him to run and play and not have to worry his line could get pulled out of his chest," dad Joshua Perez said.
A 2-year-old with a rare disease is on the transplant list for not one, but five organs.
Jakob Perez has microvillus inclusion, an inherited intestinal disorder which prevents his body from absorbing nutrients. His mom, Mickaela, says less than 100 people in the world are affected by the disease.
For 18 hours a day, the toddler who has never eaten solid food, is hooked up to an IV that gives him the nutrients he lacks.
“It goes straight into his chest as an IV that goes into his heart,” Mickaela told WNEM.
Jakob needs a new stomach, large intestine, small intestine, liver and pancreas. And to complicate matters even further, all five organs must come from the same person — a child around his size.
“Parents and guardians, when their baby passes, organ donation is not their first thought. You’re in such grief, but it could save his life and so many others,” she told the news outlet.
Her husband Joshua dreams about the day his son will live a normal life.
“I want him to ride a bike and not worry his line will get caught in the pedals or spokes. I want him to run and play and not have to worry his line could get pulled out of his chest. And every opportunity everyone else has,” he said.
“You don’t think about it until night usually,” Joshua added about his son’s dire need for the transplants. “Like I hope tonight’s the night or today’s the day. But if you think about it too much, it’ll eat away at you.”