Central Texas families on mission to find cure for 'Childhood Alzheimer's'

Every other Friday starts with a trip to Dell Children's Medical Center. Belle, 7, and her sister Abby, 3, are greeted by a special team who waits for them. 

Both sisters have Niemann-Pick Type C, a rare genetic disease with no cure and no FDA approved drug. For the Andrews family, it's a gift to be able to make the trip to Dell Children's for their injections. The hospital is about a 20 minute drive from their house. 

"We would fly up to Chicago and sit in the waiting room with other families from Texas," said Pam Andrews. Every other week for 10 months the Andrews would fly to Chicago for a clinical trial. Chicago was one of two trial sites for a specific drug that's part of the clinical trial. The trips pushed the Andrews to try to bring the trial to Austin. 

"She worked with extreme determination to get this site open for other families," said Chris Andrews about his wife. 

"We wouldn't be where we are without the Austin medical community," said Pam. 

Belle is enrolled in the blind trial. At almost three, Abby receives the drug through compassionate use.  Until the trial is over, Belle's progress can't be discussed. 

The disease steals motor skills and eventually robs children of their ability to recognize loved ones which is why it's nicknamed Childhood Alzheimer's. The diagnosis came after years of searching for answers. Belle's spleen was enlarged and development delayed but there was no concrete answer. At the suggestion of a pediatrician who was filling in for their regular doctor they turned to genetic testing. 

Test results for Belle came back positive. Within a few weeks they learned Abby had the disease too.

"The thought of watching it happen to both of our children was the most unbearable feeling," said Pam.

The feeling fueled the couple's desire to make a difference. This spring they launched The Firefly Fund. The foundation is dedicated to supporting NPC families and research to find a cure. 

"Pam and Chris Andrews were the two who really pushed for this to spread through the country. Austin, Texas is a very supportive town and they really have rallied around this family and the other families as well who have this disease," explained Dr. Augustine Park, the chief of anesthesiology at Dell Children's. Park sees the girls when they come in for their injections. 

"With our new medical school that just opened they really stepped up to the place the way they did to embrace this complex disease not just for our girls but they are seeing over half a dozen children in our area," explained Pam. 

As the Friday treatment ends for the Andrews it begins for the Ruthvens. For three years, once a month, the Ruthvens would take their children to Baltimore for injections. 

Cody, 21, and Kayla, 17 were both diagnosed with the disease. They are from Blue, TX which is a small town in between Elgin and Lexington. 

"It's so much better to wake up in your own bed and go to the hospital," said Kayla. 

"Honestly I was really happy mainly because I miss Texas a lot and I was missing so many concerts because that's my life," said Cody who loves music. 

Like the Andrews, the Ruthvens shifted into high gear after the diagnosis. Both Cody and Kayla know the trial they are taking part in is a step in the right direction. 

"I just hope a cure is found for myself and all the NPC kids to come," said Cody. 

"One day we will find a cure for this disease," said Kayla. 

"For the disease I would love to see it wiped out. It is brutal to watch take place," said Scott Ruthven, Cody and Kayla's father. 

From prom to concerts and awards Cody and Kayla are in this fight together. 

"I know I'm not alone in this," said Kayla. 

"The way we approach this disease is with determination a single focus we are going to cure this disease," said Chris Andrews.

"I can't tell you what Belle's normal will be. I can't tell you what Abby's normal will be but I can tell you we will cure this disease," said Pam Andrews. 

The army working to find a cure continues to get bigger. Until that day comes, these families will keep making memories. 

The clinical trial is full enrolled. Dell Children's says there is a chance more children with NPC will be treated under compassionate use which is something the Firefly Fund hopes to support. 

The Firefly Fund is working with the Ara Parseghian Medical Research Foundation. The Parseghian family knows what the Andrews and Ruthvens are going through. Cindy and Mike Parseghian lost three of their four children to NPC. The legacy of Michale, Marcia and Christa lives on through the foundation as the family continues to fight for a cure. Without the path the Parseghians paved there would be no clinical trial for the Andrews and the Ruthvens. 

In 23 years, the foundation has raised $45 million to lead studies, trials and advancements. 

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