Family raising money in effort to save 3-month-old son from rare genetic disorder - KPRC Click2Houston

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THE WOODLANDS, Texas – One family from The Woodlands is fighting to save their 3-month-old son’s life after learning that he had the same rare genetic brain disease as his 5-year-old sister.

The family is hoping to raise money for an experimental gene therapy treatment in Italy to save his life.

If there’s anything to know about the Rasberry family, it is that they’re a team with a lot of love. Victoria and Zackery Rasberry are a family of eight. With six children, the ones that get the most attention are 5-year-old Addi and 3-month-old Ollie.

“The big kids literally dote on them ... always trying to hug and kiss them, especially with Addi,” Victoria Rasberry said.

Addi is a fighter and continues to receive therapy every day just to breathe. Victoria and Zackery were told Addi was perfectly healthy when she was born. However, they noticed that she started to behave differently.

“Then, around 15 months old, she started walking funny,” Victoria Rasberry said.

Addi slowly lost the ability to walk, talk and eat on her own. They learned Addi was born with Metachromatic Leukodystrophy, a genetic brain disease-with a life expectancy of 5-10 years.

“It’s so rare that they don’t test for it in newborns,” her mother said.

So when little Ollie was born in October of last year, they tested.

“It was one of the worst phone calls of my life,” Victoria Rasberry said.

They learned he had the disease too.

“We tried to hit the ground running and try to find out what we could do,” his mother said.

While Addi’s condition is too far along, an experimental gene therapy treatment at a hospital in Italy could delay the progression of MLD or stop it from developing and save Ollie’s life.

“They’ll add back the enzyme that he’s missing,” Victoria Rasberry said.

However, doctors in Italy told the parents that it needs to happen by the end of March. Because insurance won’t cover it, the treatment will cost the family half a million dollars.

“We are literally in a race against time,” Victoria Rasberry said.

The family is now doing everything they can to save their son, turning to social media to help fundraise before then.

“Don’t stop fighting. Don’t stop being an advocate,” Zackery Rasberry said.

They hope to give their son this potentially life-saving miracle.

“We need to save him. We need to save our son,” Victoria Rasberry said.

To donate to the family’s GoFundMe account, click here.

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