Oklahoma girl`s mystery illness studied at Mayo Clinic

OKLAHOMA CITY - We first met Lulu in May after her mother, Jessica was nominated for the Pay It Forward award.

Lulu was born without nine genes on her 16th chromosome - one of those genes controls eating, so now a feeding tube, hidden in a small unicorn backpack, is how Lulu thrives.

Caring for Lulu is a full-time job, so Jessica's husband, Jason, stays home with Lulu and her big sister Valentine.

Together, the Zan family incessantly researches this gene deletion syndrome, which is so extremely rare, it doesn't even have a name.

However, Lulu sure can feel it - with sleepless nights, seizures, and problems with growth and development.

Her parents call Lulu their "Little Mystery." Her condition has baffled doctors and specialists, who say Lulu's is the only case like it they've ever seen.

Jessica called the Mayo Clinic and was thrilled to hear that they will accept Lulu as a case study for a week in July, where multiple specialists will run more tests.

Now, Lulu and Jessica have returned from the Mayo Clinic and Jessica says in just five days there, Lulu saw seven specialists, had a sleep study, as well as x-rays and an ultrasound.

Though researchers are far from finding a diagnosis, they were able to find a third child with Lulu's same condition, which means that all three known cases in the world involve girls.

Other than Lulu, one little mystery lives in Ohio and the other lives all the way in Italy.

Jessica has been in contact with Italian researchers who are also interested in studying Lulu's case.

Jessica also says Lulu's gene-deletion condition will remain a life-long study at the Mayo Clinic.

Lulu also started full-day pre-k this semester and her teachers say she is blossoming!

Things are definitely looking up for this Oklahoma family that is so deserving.

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