Lafora disease is a rare genetic condition that typically affects kids and adolescents, causing frequent seizures and the gradual loss of cognitive function. There is no cure, so the focus for many parents inevitably turns to quality of life. That’s something Detroit mom Azeza Kasham was struggling to maintain for her 17-year-old son, Gigi Breadiy, earlier this year.
He was diagnosed in 2019, just days after his older brother died of the disease. Kasham’s husband has his own health problems and isn’t able to work, and the couple has two younger boys as well, so she took on multiple jobs to pay off medical debt. Breadiy uses a wheelchair, and the family home wasn’t fully accessible, so caring for him was becoming increasingly difficult. She’d tried fundraising on social media, but still felt like she was drowning.
A stranger she connected with online would be her rescue buoy. Josh Liljenquist is a Minnesota content creator with over 23 million followers. Many of his videos fall into the somewhat controversial random-acts-of-kindness genre, but the 28-year-old’s main focus is rallying tangible support for people in need. After learning about Breadiy, he posted footage of himself meeting mother and son in February. Less than two months later, a GoFundMe he launched for them had raised nearly $600,000.
“It’s just completely changed my life, you know?” Kasham shared during a recent phone call with Nice News. “It’s enabled me to give Gigi everything he needs, but that’s not all [Josh] did. And that isn’t even the most important thing. He restored my faith in humanity.”
In the nearly seven months since meeting, Liljenquist and Kasham have become extremely close. “She’s literally like my second mom,” he said, adding: “She keeps saying that I changed her life, but I think she changed my life more than I changed hers.” His own mother also speaks to her often, and even flew out to Michigan to spend time with the family.
The women connected so strongly because they both know what it’s like to care for a sick child, and the financial toll it can take. For the first six years of Liljenquist’s life, he was in and out of the hospital. He has a genetic disorder called alpha-1 antitrypsin deficiency as well as eosinophilic esophagitis, a chronic inflammatory disease of the esophagus.
That background has led him to direct more energy into helping families experiencing similar situations. “I want other parents to not have to deal with the same thing that my parents dealt with,” he said. But his fundraising has benefited people in all sorts of circumstances: a man in need of a new roof, a couple facing homelessness, a woman hoping to open a permanent pay-what-you-can cafe.
For Kasham, the support from Liljenquist’s felt like God had answered her prayers. He, too, felt a divine hand in their meeting. The fact that they belong to different religions was a moot point. “She kept asking me, ‘Well, you know, you’re a Christian person. I’m Muslim. Does that matter?’ And I’m like, ‘Oh my gosh, no, not at all,’” he recounted. “That’s the first thing she would ask me. And I said, ‘Why would that matter?’”
Before the GoFundMe, Kasham had to bathe Breadiy in the garage because the shower wasn’t accessible. Now, the family has paid down debt and made upgrades to their home, including a roll-in shower, that allow him dignity and privacy.
“He has his good days. He has his bad days,” she said, noting that his seizures have worsened in recent months. “But one thing he has that puts the biggest smile on his face is he has his own space.”
You can donate to Lafora disease research through Chelsea’s Hope.
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