Rare Immune Disease Hinders 6-Year-Old Boy From Eating and May Be the First to Have It

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Rare Immune Disease Hinders 6-Year-Old Boy From Eating and May Be the First to Have It

 

A rare immune disease causes a six-year-old boy to take his meals through an IV to prevent him from getting sick.

For the last five years, Cohen Bramlee has never properly eaten a meal and only gets the needed nutrients through a central IV. His stomach can't tolerate food, according to his mother, and doing so would lead him to vomit to the point of getting into shock.

When he was merely four months old, Cohen was hospitalized with odd health issues that puzzled not only his parents—Todd and Carrie Bramlee—but his doctors as well.

"When he would get sick, he would be sicker than the other kids ever were," Carrie told People magazine. He spends about 180 days in the hospital every year.

"He just progressed in this illness where things seemed to get worse and worse over time," the mother added. She noted how they would discover "these small symptom-type diagnoses," know what is happening, but not know the reason for it.

 

Cohen Bramlee / Photo by: Carrie Bramlee via People

 

"Nobody could ever figure out what was causing all of them."

Aside from gastrointestinal issues, Cohen would often suffer from fevers and infections in his bloodstream—leading doctors to suspect the boy's immune system as the culprit for his condition.

Carrie noted their GI doctor saying, "There is a bigger monster that’s causing all of this," and that, at the time, they may "never figure out what that monster is."

"So you can imagine as a parent, that’s so disheartening to accept that."

However, five years of being undiagnosed came to an end when researchers at the Undiagnosed Diseases Network at Duke University determined that Cohen "had a variance in an immune system gene," People magazine said. It added that additional research helped prove that the gene mutation is causing the boy's disease.

The disease causes Cohen's immune system to over-respond to everything—from food in his GI tract to the viruses and bacteria, according to Carrie. This extreme respond is what caused the boy to go into multiple shocks and even led to acute liver failure. It also affected his other organs such as the gallbladder and pancreas as well.

People magazine reported doctors hoping that a bone marrow transplant as a possible cure for the rare disease, which they believe is also affecting other children.

"It was the first time that we really had hope that this was going to have a cure," Carrie told the magazine. "He’s been very sick and we came close to losing him several times, so now knowing that there is a chance for him to not only be healthier but be cured is unimaginable."

After sharing her son's story on social media, Carrie said she found three other boys with similar conditions. All three of them are now being studied for a similar mutation on the X-linked gene.

Cohen will undergo the bone marrow transplant, with his 16-year-old brother Todd Christopher as the donor. The six-year-old will undergo chemotherapy as preparation for the surgery.

He remains positive in spite of his condition, telling his mother that it is his miracle and "it’s going to work out."

 

Cohen with his mother, Carrie / Photo by: Carrie Bramlee via People

 

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