Family Lights the Fuse of Hope

To help with the expenses of the gene therapy treatment trip to Italy, click below:

As you get ready for any last-minute fireworks purchases, listen up. An Omaha family wants you to stop by their tent.

When it comes to combinations that work, fireworks and a lemonade stand fit together well. For the Price family this backdrop came, not out of a fascination with the Fourth, but out of necessity.

Amy Price said, "We don't want a fireworks stand. We want to go to others."

They're trying to save Cecilia.

Amy said, “I don't think I've taken a breath in 3½ years.”

Cecilia joined the Price's five months ago. She's the only one of the triplets with the full-blown metachromatic leukodystrophy. Usually hope is lost with a genetic terminal illness but not here - because of her older brother Giovanni.

Two years ago he was just the second child in the world to undergo groundbreaking gene therapy in Italy.

Amy said, "He's the best outcome they've had so far."

So far, the enzyme that usually eats away at the insulation protecting his nerves, isn't.

Cecilia will soon be going through the same treatment.

“I've tried to explain that she will be gone for a while and he wants to know why - that she's sick and he has to go through what he went through."

The Price family never knew they were carriers of this disease until their fourth child Giovanni was nearly a year old. By then it was too late for older sister Liviana.

We first met her two years ago when the disease was taking away her ability to walk and talk and later, her hearing and sight. She died in September at the age of 5 1/2.

Amy said, “Gio is 4 ½. That's a year from when we lost her. If he hadn't had the treatment he would be laying in a bed not walking, talking, eating. Instead he wants to be a fireman, build stuff - micromanage us and tell us what to do."

That's why they're willing to put Cecilia through so much when she's so little. Big brother will be the inspiration every step of the way.

The Saving Cecilia tent is located on the northwest corner of 84th and Giles.

Half the family plans to leave for Italy in August.

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