THE WOODLANDS, Texas — A baby boy in The Woodlands, that so many people have been trying to help save, will be in the national spotlight on Wednesday.
Four-month-old Ollie Rasberry and his family will appear on The Doctors at 2 p.m.
Ollie has a rare and deadly disease called Metachromatic Leukodystrophy or MLD. He’ll develop normally until he's 1 then will start regressing until he’s unable to move or breathe.
His sister, 5-year-old Addi, has the same thing and has already regressed. It’s too late to save her but not Ollie thanks to a new treatment that costs about $500,000 out of pocket.
Since KHOU's story first aired in January, $350,000 have been donated to their GoFundMe account.
How to help the family
To help the Rasberry family pay for Ollie’s life-saving treatment, click here.
To learn more about MLD, click here.
You can follow Ollie's story on Facebook here.
Addi is unable to move, talk or eat, however, videos a few years back show a toddling, talking, silly little girl.
MLD is a disease that impacts the central nervous system and the peripheral nervous system. Addi developed normally for her first 15 months or so.
“All the sudden, she started having a lot of trouble walking,” mother Victoria Rasberry said. “She was falling down a lot.”
The Rasberrys turned to doctors for help as they watched Addi regress. It took nine months before she was finally diagnosed with MLD, the day after her second birthday.
“They basically told us to go home and spend as much time with her as possible. To go on our Make-A-Wish trip and just enjoy her," Victoria Rasberry said.
Within two months of her diagnosis, Addi lost the ability to speak, eat and hold her head up. However, she continues to develop cognitively. She understands what’s happening around her. What she doesn’t know is kids with the disorder usually live until only 5 to 10 years old.
“There’s a lot of grief for what won’t be and what she can’t do anymore,” Victoria Rasberry said.
It’s too late for Addi. Her parents know it. They’re squeezing in as much love as they can, while they can, but it’s not too late for her 4-month-old brother, Ollie, who also has MLD.
Because Addi has the disease, Victoria and her husband Zack Rasberry knew it was important to test Ollie. Victoria Rasberry spent her entire pregnancy nervous, and when he was born in October, Ollie was tested and diagnosed.
“I was devastated, and I knew that we had to act fast," Victoria Rasberry said.
There’s a gene therapy that has been approved for commercial medical use in Europe. Victoria Rasberry said with the recommendation from doctors in the U.S., doctors in Italy have agreed to treat her son, but treatment has to start by 6 months old, and it’s expensive. The Rasberrys need to raise $500,000 over the next month.
“It’s overwhelming, is the biggest thing that comes to mind, because we just have so little time to raise so much money," Victoria Rasberry said.
They have been working nonstop to raise money. The clock is ticking, and they don’t have nearly enough money. Without the treatment, Ollie will not make it.
“I don’t know what’s worse...I don’t know if it’s watching your child decline and not knowing what’s going on, or having a child and knowing that they will decline," Victoria Rasberry said.
The best things in life aren’t always priceless; Ollie’s life costs half a million.
“My soul is tired, you know? I’m weary, but I’m trying to fight the fight and do what I need to do to save his life," Victoria Rasberry said.