AUSTIN, Texas — For the past 10 years, the Benson family has been fighting to raise awareness and help find a treatment for Batten disease, which their daughter Christiane suffers from.
“Her life had meaning and purpose and this was something our family was called to do,” Charlotte Benson said.
Now a possible treatment has been found and the family is on an expedited mission to raise money to get the treatment to clinical trials.
“We’re literally playing the clock for our daughter’s life.” said Charlotte. “She’s 16 and the life expectancy is late teens, early 20s”.
The Benson family, along with the Beyond Batten Disease Foundation they founded, need to raise $6 million by the end of 2018. To help in their efforts, Garland Benson, Christiane’s 13 year-old brother, decided he would help raise $1 million himself.
“Me and my sister are very close and I felt if she were in my situation she’d probably do the same thing,” he said.
Garland Benson has been very active in trying to raise money from putting flyers in stores around town, to setting up lemonade stands. Social media has been a big help in his efforts. He was able to partner with UT quarterback Sam Ehlinger for a social media campaign that brought a lot of attention to his efforts.
“That was so great, I think he’s a very nice kid and that helped out a ton,” Garland Benson said.
Ehlinger, who heard of the Benson’s through a family friend, was happy to help out.
“To have leverage just because of what I do is truly special and I’d be wasting it if I wasn’t giving back,” Ehlinger said.
To this date Garland has raised over $600,000 and his campaign of trying to get 100,000 people to donate $10 to reach his goal continues.
If you want to help you can donate $10 by texting the word ‘Hero’ to 501501. You can also visit the website beahero.beyondbatten.org.