9-year-old boy with genetic disorder that affects 1 in 100 million people receives FIVE organ transplants after waiting nearly his entire life for a match

A Michigan boy with an extremely rare genetic disorder has undergone five organ transplants after waiting his entire life for a match.

Jakob Perez has microvillus inclusion disease (MVID), which means his body cannot properly absorb food.

The condition, which affects fewer than 100 people worldwide, means he must be given essential nutrients through an IV.

Jakob needed a new stomach, colon, small intestine, liver and pancreas and his family had been waiting for a donor for nine years. It had to be a boy of about the same age and size.

Jakob Perez of Chesaning, Michigan was born with a rare condition that leaves him unable to process nutrients from liquids and food

Jakob underwent surgeries on June 26 to receive a transplanted stomach, colon, small intestine, liver and pancreas

In the end, what Mrs. Perez called another family’s worst day turned into her family’s best day. Doctors called and told them that Jakob would receive his deceased donor transplants just two days later in Pittsburgh.

Mickaela Perez, Jakob’s mother, said, “They called us Monday afternoon and said, ‘We have a match and we need you to come to Pittsburgh.'”

Jakob, who was described by his mother as a “light” and a little neighbor, underwent the five-organ transplant on June 26.

She added: ‘Just thank you. The worst day of their lives, it was the best day of our lives. And we just want to say thank you.

“That’s not even close, but just thank you. And I hope that someday we meet you and you know that we will cherish this gift of life forever.”

Joshua Perez, the father of Jacob, told local station WNEM: ‘It was surreal. I mean, to be honest, we got to the point where we weren’t sure if it was ever going to happen. We tried to prepare for it as best we could.’

Jakob still has a long road to recovery ahead of him: two months in the hospital and then another three months in Pittsburgh for aftercare.

Jacob’s mother Mickaela [far left] said she received a life-changing call on Monday telling her they had found a donor for her son and that he was already in an operating room in Pittsburgh on Wednesday

Jakob has a long road to recovery ahead of him: two months in the hospital and then three months in Pittsburgh for aftercare.

MVID leads to chronic diarrhea and prevents the body from absorbing vitamins and minerals.

Jakob can eat and drink, but because he does not receive any nutrients, he is fed through an IV for the rest of his life in the form of calories, proteins, fats, vitamins and minerals, electrolytes and fluids.

MVID primarily affects the small intestine, but also causes problems for other organs in the gastrointestinal tract.

It is caused by defects in the cells that line the small intestine. Specific genetic mutations affect small finger-like particles on the surface of intestinal cells.

These tiny particles, called microvilli, are essential for nutrient absorption because they increase the surface area of ​​the intestinal wall.

This makes the small intestine the most critical organ to replace. But it is not the only organ negatively affected by the extremely rare condition.

The large intestine, which takes over after the small intestine has done its job of extracting nutrients from food, absorbs much of the remaining fluid and electrolytes that the small intestine has not extracted.

Jakob has been receiving essential nutrition through an IV his entire life. His small intestine cannot absorb calories and other vitamins from food

But because the small intestine cannot process the nutrients and fluids effectively, most of it ends up in the large intestine, which cannot process this amount.

When small intestinal dysfunction exceeds the capacity of the large intestine, the body cannot retain nutrients and patients experience watery stools.

The stomach suffers permanent damage because it has not been able to fully absorb nutrients for years.

Chronic malabsorption affects the way the stomach empties and the health of the stomach lining, making a transplant necessary.

Likewise, the long-term damage caused by the various gastrointestinal complaints caused by the condition affects the pancreas’ ability to produce essential digestive enzymes, further compounding the problem of fat and protein absorption.

Liver problems arise from being on an IV for nutrition for years – in this case nine years.

This can lead to fatty liver, scar tissue and eventually liver failure.