From Go Fund Me
Just days after learning about her son’s neurodegenerative genetic disease, Gurjot “Jo” Kaur and her husband Richie are setting up a research foundation in hopes of finding a cure.
Doctors diagnosed their 15-month old son Riaan with a progressive genetic disease with an average life span of three to five years.
There are currently no cures for the disease.
Kaur is known as the Sikh feminist on Twitter and has more than 15,000 followers.
Yea I love this kid. But I am also in constant awe of him. A star, a force of life, a beautiful creation of the universe. So full of life, so interesting, fun, smart, sweet as can be. Salt-of-the-earth. In him, I see infinite possibility. He is perfection. Waheguru. #PrayForRiaan pic.twitter.com/GFVBiTZCjj
— Jo Kaur (@SikhFeminist) April 3, 2021
“Riaan’s treatment is deeply specialized, and there are only a handful of experts in the U.S. that have experience with his particular genetic condition,” wrote her sister Gur Fateh on the family’s Go Fund Me page. We are planning to take him to Boston, Minnesota, and potentially travel to other locations for treatment to manage his symptoms.”
The campaign has so far raised $25,000.
“We were told our disease is incurable and untreatable, and to stay on top of his symptoms. That wasn’t enough for us,” Kaur told the American Bazaar. “We aren’t going to sit back and let Riaan die without doing more. We’re committed to finding and doing whatever we can to push the research and create viable therapies for our son.”
Kaur recalled when she learned her son at just three months her son was diagnosed with cataracts and likely had never seen his own parents. They learned to put contacts in their child and one month after surgery, Riaan could see for the first time.
Suddenly their child could smile back at them.
“I’m really pleased with some of the researchers I’ve met who seem really committed to helping Riaan and other children as much as they can,” she said. “What I can say is that I believe there is an answer out there, and with the right focus, attention, and maybe even funds, we can absolutely get there and save my Riaan’s life. We have to — he has mountains to climb, books to read and write, and baseball games to attend.”
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