The Austin community is coming together to rally behind two champions, the Andrews sisters. Two beautiful girls full of life, heart and love. Belle is six. Abby is just two. Both are fighting a very rare genetic disease and on a journey their parents Pam and Chris Andrews never imagined.
"I had already sensed something was going on, but i didn't know how it was all tying together. Poor fine motor skills, swollen spleen, and low platelets," said their mother, Pam Andrews.
It was in the gym at Champions Westlake Gymnastics and Cheer that it became clear to Chris. "One time, between breaks, she came back and couldn't do what the other kids could do, that was something that told me something's not right here," said Chris Andrews.
There was no clear answer for the Andrews. Genetic testing was suggested.
The process was long, the wait felt even longer.
The heartbreaking news came back early, in March of this year. The diagnosis, Neimann-Pick Type C-1. "He said she would live between the ages of 12 and 20.. You hear someone tell you that you have maybe six more years, there's no words to describe what that feeling is," said Chris.
Neimann-Pick Type C-1 is a very rare progressive genetic disorder with no cure.
"You begin the process of neurological decline. It can look like Dementia, Alzheimers, ALS, Parkinson's. It affects the mind, body, it's a slow steady decline," said Chris.
"Soon after Belle was diagnosed the doctor said we need to test Abby right away. Abby has the same genetic markers. Both girls have the same disease," said Pam.
Pam and Chris had to fight this cruel disease. They wasted no time tracking down a clinical trial.
"I couldn't sit back and watch my kids degenerate," said Pam.
Every two weeks the girls go to Chicago for injections of VTS-270.
They're hopeful the medicine is slowing the progression of the disease.
"We're dealing with a disease that 600 kids in the world have, you can't get upset, none of the doctors we had here in our lives have ever seen this disease before," said Pam.
Their dream? To move the clinical trial to Austin. They're working to start a foundation to support others and find a cure. Austin is answering the call for help. From the gym to raising money online, the community is supporting the Andrews in their fight to save Belle and Abby .
"It's a giant disease and it's a daunting task and I'm grateful we have a large villiage," said Pam. "We're grateful to have a shot, some sort of hope. You met my wife we're not going to roll over and say that's it. We're going to fight this as long as it takes," adds Chris.
The Andrews don't take a single day for granted. Pam and Chris are holding on to hope and prayer. They're comforted knowing the girls have each other and that they're not alone. "Cherish every moment with your child. You don't know when the time with your children is going to end," said Pam.
There is a fundraiser for the Andrews girls Saturday, August 26 at Champions Westlake Gymnastics and Cheer. It's from 1:30 to 4 at the gym off of Bee Cave Road. Families and children are welcome. There is a 10 dollar recommended donation.
All of the money raised goes to the "Saving Belle and Abby" gofundme account.