When you think of Alzheimer's, most people think of people in the later stages of life. Your grandma, your grandpa, your elderly mother.
But for Pam and Chris Andrews, when they think of Alzheimer's, they think of their six-year-old daughter Belle and 2-year-old daughter Abby.
Both girls were diagnosed with Niemann-Pick disease type C1, a rare and fatal genetic disorder that is referred to as 'childhood Alzheimer's.' The disease will eventually cause both girls to lose their ability to think, hear, walk, and talk. Most children who are diagnosed don't live for more than 10 years.
Chris Andrews first noticed something was wrong in Belle when she was at a gymnastics competition.
"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."
Only 600 kids in the world have this disorder, which is carried through genetics. Abby and Belle both had a 25% chance of contracting it.
Chris and Pam struggled to find treatment, but they found a promising clinical trial. Vtesse Inc. makes an injection called VTS-270 which helps treat the symptoms of the disease.
"We will not let them die,” vows Pam.
The Andrews family has started a foundation, called The Firefly Fund, which will help find cures for this, and other neurodegenerative diseases that affect kids.
Treatment is not cheap, though. Not to mention getting approval for the clinical trial. Abby was granted a "compassionate use" exemption from the FDA, while Belle was enrolled in a clinical trial where she could very well be receiving a placebo. Friends and family have started a GoFundMe page as insurance does not cover the costs of either child's treatment.
Chris Andrews doesn't let anything hold him back, though.
“No matter what we have to do, no matter who we have to call, no matter how much money we have to raise — whatever it takes — nobody’s going to take my kids.”