An Omaha family is seeing progress with an overseas gene therapy program to take on a rare disease that robs youngsters of basic skills such as running and jumping.
"Oh, Giovanni,” says Amy Price, where silence is a rarity in their midtown home.
With five children between the ages of eight and two, it’s Giovanni that's made the family frequent fliers.
"It's a strange perspective,” said mom. “I look at him everyday with awe with the little things that he does. Things most parents wouldn't think twice about. I stop every time and smile."
Giovanni -- who's three now -- has spent the last two-and-a-half years going back and forth to Italy. He was the second participant in a gene therapy clinical trial for Metachromatic Leukodystrophy. The effects often begin to show by the time one is two-years-old.
"I'm terrified with winter coming up,” said mom, because Liviana isn’t doing well. "Illness scares me the most. She's very fragile right now."
Liviana – who’s five now -- has the same disease as her younger brother.
We first met her 2-and-a-half years ago. Her rapid decline is the main reason the family rushed overseas for the experimental procedures for Giovanni. And it’s working.
"Giovanni hasn't lost anything,” said his mother. "At the age he is now - Liviana couldn't walk or talk or eat."
The family wishes the diagnosis would have come sooner for Liviana. She cannot benefit from gene therapy because the damage has already been done.
"Every night I'm thankful for having another day,” she said. “When she’s happy or affirmative – she’ll give me really long blinks. She still smiles and gets happy about things. We’re very blessed for that.”
And while Brad and Amy Price's three other children do not have it, Liviana remains the center of attention.
“Giovanni will go over to her bed and stand with her and play cars and talk to her. He'll put things in her hands. I'll come walking through and she'll have a bunch of quarters in her hand that he has given her,” said mom.
Giovanni is off to Italy in the next week for some more tests. No doubt, he’ll be missing Liviana while he’s away.
"She has her own special purpose.”