Local boy battles extremely rare disease

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SAN DIEGO - A 6-year-old boy from Imperial Beach has outlived most other boys who have had the same rare disease, but he continues to fight for his life at Rady Children’s Hospital.

Jaymie Paldi's son Krystopher has a rare genetic disease called IPEX syndrome.

"It’s a disease where you don’t make normal regulatory T-cells," Paldi said. "He can get one cold and it can knock him down."

Krystopher is only one of fewer than 40 cases nationwide.

"He’s been fighting for his life since he was 4 weeks old," his mother said. "We come [to the Rady Children's Hospital] about 2 to 3 times a week."

"It's usually in boys. They usually die of infection or uncontrolled auto immune problems at early ages, usually before 2 years of age," Dr. Eric Anderson said.

Anderson, director of the bone marrow transplant program, said the condition can be treated with medication, but the only cure is a bone marrow transplant.

"If the transplants successful and you get a working immune system from your donor, your symptoms should resolve," Anderson said.

Krystopher had his very first bone marrow transplant at 5 months old, his mother said. Unfortunately, Krystopher’s transplant didn’t take.

Paldi hopes by telling his story now, she can create awareness and help other families.

"The more research we find for this genetic disorder maybe there’s something we can do to save another baby’s life," she said. "I refuse to let this disease win, I refuse."

She’s counting on another transplant to save her son’s life.

"I hope and pray he’s strong enough to kick through this like he did his first one," Paldi said.

For information on an upcoming bone marrow donor drive in honor of Krystopher, click here.

Paldi also has a donation page set up, if you would like to help click here.


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