Boy from Texas Raises $1.2 Million to Help Sister with Incredibly Rare Disease
A 14-year-old boy from Austin, Texas, has managed to raise over $1 million to help save his older sister, who was born with a very rare condition called Batten disease.
Garland Benson loves his sister Christiane more than anyone else in the world, and when he learned that the family needed to raise money to push for a treatment, he didn't think twice.
It has been reported that Batten disease is a progressive, degenerative neurological disorder that has no treatment or cure, which is why Garland's quest is so important.
.@People Magazine has just published an article highlighting Garland’s quest to raise a million dollars for his sister.— Beyond Batten (@BeyondBatten) May 21, 2019
Thanks again to everyone who helped Garland hit his goal! https://t.co/uOX7FMe2Mk pic.twitter.com/zdb1p1wA1A
ASIDE FROM THE DISEASE, CHRISTIANE IS A HAPPY GIRL
Christiane is almost entirely blind, but she still loves spending time with her brother walking their dogs, riding a tandem bike through their neighborhood and even snow skiing.
Craig and Charlotte, their parents, realized something was wrong while Christiane was in kindergarten, as she was holding books really close to her face.
Christiane suffers from a rare, fatal #neurodegenerative #disease that affects #children. It is called #Batten. Your @amazonsmile purchase helps fund a #treatment that is now in sight for Christiane and others with this deadly disease. #seasonofsmiles https://t.co/aMZEeURMwQ pic.twitter.com/WsFIykR2rx— Beyond Batten (@BeyondBatten) November 25, 2017
At first, they thought she needed glasses, but she was soon diagnosed with juvenile Batten disease. As a CEO of a biotechnology company, Craig started learning about the condition and, with his wife, created the Beyond Batten Disease Foundation in 2008.
Christiane inspired him to take on the task himself and that she is brave and never gives up
Garland spent the day putting up flyers around Austin to raise awareness of his Be a Hero campaign. His current total is $595,295. Text HERO to 501501 or donate at https://t.co/66AFC4TLj4 to help him reach his goal! #beahero pic.twitter.com/kPYRVZdFry— Beyond Batten (@BeyondBatten) July 18, 2018
USING ALL THE RESOURCES AT THEIR DISPOSAL
Since then, they have worked with 110 different groups and invested in 440 research projects, which lead them to a possible combination treatment. But to take it to the FDA, they would need 6$ million.
AN HERCULEAN TASK BASED ON LOVE
He also spoke about his sister's rare condition at schools, churches and radio stations, held lemonade stands, garage sales and fun-runs. With everyone's help, he now has $1,2 million.
According to the 14-year-old, Christiane inspired him to take on the task himself, saying that she is brave and never gives up, and that is why he wants to be like her.
ONE STEP CLOSER TO HELPING CHRISTIANE
With the money he raised and the money the parents managed to collect, they have surpassed their $6 million goal and the meeting with the FDA reportedly went well.
Now, they are racing against time, as Batten disease is often fatal in late teens or early twenties and Christiane will turn 17 this summer.
OTHER CHILDREN WITH HEARTS OF GOLD
But Garland is just one of many children who, at such a young age, already have a great sense of responsibility and compassion. Collier Rule, a 10-year-old boy, also went to great lengths to raise over $18,548 to help his dying friend named Bo.