Family running out of time to save 3-month-old with rare disorder

THE WOODLANDS, Texas (KTRK) — A family in The Woodlands is seeking help after two of their children were diagnosed with a deadly medical disorder.

“It’s so hard on their little bodies,” said mother Victoria Rasberry. “I want him to have a chance and I want him to able to grow up.”

Victoria and Zackery Rasberry have six children.

Two of them, 5-year-old Addi and 3-month-old Ollie, have been diagnosed with Metachromatic Leukodystrophy, a complex disorder where nerve damage causes the brain and nervous system to progressively lose function.

The life expectancy for those with the disorder is five to 10 years.

“You begin to lose everything that you’ve learned,” Victoria explained. “Like walking and talking. Addi can’t eat on her own now. She’s tube fed now.”

“We’ve already seen what this disease does, and we don’t want to see it again,” added Zackery.

Experimental gene therapy could help one of the children, but the family doesn’t have much time left to begin treatment.

Addi’s disease has progressed too far for treatment to work. But, they said Ollie still has an estimated three months until the disorder sets in.

Specialized doctors in Italy have agreed to try the experimental gene therapy treatment that could delay or prevent onset.

But, the therapy is not covered by insurance, and the Rasberry family is running out of time.

“We can’t lie down and give up. It’s not us. It’s not our mentality,” Zackery said. “We fought for Addi for years, and we’re going to fight for Ollie.”