THE WOODLANDS, Texas — There’s a family in The Woodlands who needs a miracle, a Hail Mary pass to save their child’s life.
Two of their children have a rare genetic disorder. The family says the disease is too advanced in their daughter, but it’s still possible to save their youngest son if enough people can help.
5-year-old Addy Rasberry is unable to move, talk or eat, however, videos a few years back show a toddling, talking, silly little girl.
Addy has a rare genetic disorder called Metachromatic Leukodystrophy, or MLD. It's a disease that impacts the central nervous system and the peripheral nervous system.
Addy developed normally until about 15 months of age.
“All the sudden she started having a lot of trouble walking,” said Victoria Raspberry, the children’s mother. “She was falling down a lot.”
The Rasberrys turned to doctors for help as they watched Addy regress. It took 9 months before she was finally diagnosed with MLD, the day after her 2nd 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, Addy 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 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 Addy. 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 3-month-old brother Ollie, who also has MLD.
Because Addy has the disease, Victoria and her husband Zack knew it was important to test Ollie. Victoria 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 said with the recommendation from his doctors in the U.S., doctors in Italy have agreed to treat him, 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 fundraising. 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.
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.