14-year-old Garland Benson is often seen with his sister, 16-year-old Christiane, walking their pets together.
Whether it is snow skiing, horseback riding or biking, the two enjoy doing outdoor activities together.
But Christiane is almost completely blind due to a Batten disease, a rare nervous system disorder that starts in childhood and gets worse over time.
Speaking about his sister, Garland told People: “She’s brave and she never gives up — that inspires me to do it myself.”
Scientists working with Beyond Batten, a foundation Christiane’s parents founded, discovered a combination treatment that might delay the progression of the illness.
It was in 2016 when the foundation started a campaign to raise $6 million to get the treatment to the Food and Drug Administration.
One afternoon, Garland asked his mother how much money they had managed to raise so far and she said about $1 million.
Garland said: “Great. You only have $4 million to go.”
“No,” his mother, Charlotte, said. “This is 5th-grade math – five plus one is six. We have $5 million to go.”
Garland then told his mom: “No. I’m going to raise $1 million myself.”
Speaking about her son, Charlotte told People: “I think it’s amazing that his love for his sister inspired his belief that he was part of the solution.”
His father, Craig Benson, said: “We laughed about it for a while. He said, ‘No. I’m serious.’”
The boy’s plan was to ask 100,000 people to donate $10 each. He created a video with the University of Texas quarterback Sam Ehlinger, who then shared it on social media.
That night alone they raised $138,000. Garland also spoke about his sister on the radio, churches and schools and he held garage sales, lemonade stands and fun-runs.
“It was a grassroots campaign inspiring kids that they could make a difference and do something,” Craig expressed.
One evening, two children rang their doorbell and gave them a $2,000 check. The children had spent their summer walking dogs, watering plants and pulling weeds to help raise money.
“It was very, very touching,” Charlotte said. “He inspired so many other kids to get involved.”
Garland’s final donation exceeded their $6 million goal. The foundation also had a meeting with the FDA and now looking for a pharmaceutical company to partner with to manufacture the drugs.
“The FDA gave us a clear pathway,” Craig said. “Unfortunately everything just gets more expensive.”
Speaking about his sister, Garland said: “She’s really nice to me. If she was in my situation, she would do the same for me.”
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