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Ind. (WFIE) — A 2-year-old girl from Pike County is the first child in the United States diagnosed with Rajab Interstitial Lung Disease with brain calcifications. That’s a genetic disorder so rare that only 10 known cases exist worldwide
Wrenley Lantaff’s family said the warning signs appeared early: she struggled to eat, vomited frequently, and did not gain weight at the same rate as other children her age
In October 2025, the family visited a pediatrician after Wrenley’s stomach became noticeably swollen. She was sent to an emergency room and then life-flighted to Louisville, where doctors identified the condition, also known as Rajab Syndrome
Doctors say the genetic disorder can affect the brain, lungs, and liver. In the few cases documented overseas, the disease typically presents in the lungs first. Wrenley’s case is different — it has affected her liver
“She is in liver failure,” Wrenley’s mother, Kayde Lantaff, said. “She has to have a continuous feed because it causes her sugars to drop, so she can’t be off of it for any more than 10 to 15 minutes.”
If Wrenley requires a transplant, her family said it would come from a deceased donor, with surgery lasting several hours and a hospitalization of several days
“There’s just not enough known about it, so they are very hesitant because they don’t know any of the outcomes,” Kayde Lantaff said
Genetic testing confirmed that Wrenley’s older sister, Salem, does not have the disease and is not a carrier. Her parents said the results have led them to decide against having more children
“They told us that if we had any more, their chance of having it would be high,” Kayde Lantaff said. “There’s no more, because I can’t.”
Support has come from surrounding communities, like Gibson County, through dinners, auctions, and local business donations
“We have received donations from all kinds of small businesses, bigger ones too. It’s been crazy how much help and donations we have received,” Kayde Lantaff said
A pork chop dinner and silent auction to benefit Wrenley is scheduled for Saturday, July 18, at the Oakland City Golf Club. Pork chop dinners are $10, and a portion of food truck proceeds will also go toward Wrenley’s transplant-related expenses. They are still picking up items to be auctioned
To donate, visit the Children’s Organ Transplant Association (COTA) for Wrenley Fund
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