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When Jakob Perez was born, his doctors he was diagnosed with an incredibly rare, inherited disease: microvillus inclusion. This disease inhibits a child’s body from properly absorbing nutrients from ingested food, which ends up resulting in malnutrition and dehydration and long-term growth problems.
For Jakob, this means that he has to spend 18 hours every day hooked up to a machine that feeds him the right amount of nutrients through an IV tube in his chest, leading to his heart.
In order for Jakob to have any hope of living a normal life, he has to undergo stomach, large intestine, small intestine, liver, and pancreas transplants. Without new organs, his body will never be able to absorb nutrients to help him survive, independent of external support.
To make the situation even more complicated, however, all of Jakob’s donor organs must come from the same donor – who has to be a child about the same size as him.
Jakob’s mother, Mickaela, realizes that this is a tall order – not just logistically, but realistically.
“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 explained.
She and her husband are just trying their best every day to stay hopeful that some family will realize how they could save other children’s lives by donating the organs of their deceased children.
Until then, the Perez family has no choice but to wait for news from their doctors.
Jakob’s father, Joshua, has said, “I want [Jakob] 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.”
You can watch a news feature of Jakob and his family here:
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