NASHVILLE, Tenn. (WTVF) — It can be so frightening for parents to learn their child has a rare condition. It must be unimaginable to hear your child could be the only person with a particular diagnosis. One family is asking for your help as they approach some trial treatments.
When their daughter was born, Jazzi and Dwight Little wanted a name with deep meaning.
"This is Aadi Ase," Jazzi said, referring to her 19-month-old daughter. "Aadi means 'the first.'"
They had no idea how much the name would fit their little girl's story.
At five-months-old, Dwight brought Aadi to Monroe Carell Jr. Children's Hospital at Vanderbilt. Aadi seemed to be sleeping too much, and there were other things that were concerning them.
"The next call I got was, 'they're admitting her right now. It's looking like her organs are shutting down,'" Jazzi remembered.
"Aadi was very sick when she first came to the ICU," said Dr. Matthew Solomon. "Her body was experiencing severe inflammation, and it was effecting multiple organs in her body including her kidney, heart, and lungs."
Dr. Scott Ward said Aadi actually has two rare genetic disorders.
"She has a disorder called MEF2C, a neurodevelopmental disorder," he explained. "She has a second disorder as well called A20 haploinsufficiency syndrome. She may possibly be the only person with both."
A garden by the hospital has become important to the family. It's, of course, surrounded by city, but they've always found so much peace there.
"You can't have a loud noise or any banging, anything like that," Jazzi said. "All of those things will trigger seizures for her. 30-50 a day."
"I want her to have some sort of a normal life," Dwight added.
Aadi has people ready to help. Big brother Blu is always there. Even at four-years-old, he's decided he wants to be something that can help his sister.
"We call him Dr. Blu!" Jazzi smiled. "That's his name. Dr. Blu. Paging Dr. Blu!"
Jazzi also asked for her team at Monroe Carell Jr. Children's Hospital at Vanderbilt to be included in this story as a thank you for their work.
She does have something else to ask of people.
She's opened a GoFundMe called Tiny hands, Big fight : Emergency support needed for AADI. Jazzi said Aadi has been accepted for clinical trials at Weill Cornell Medicine in New York. She said the family needs help with the cost of travel and housing near the hospital.
"I don't think people have grasped the concept of the pain, the hurt, the fear that we went through," Jazzi said. "She's going to need everyone to take care of her for the rest of her life. She's got a strong family unit."
To donate to Aadi's GoFundMe, visit here.
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