Patient stories

Jojo Vang: One of 14 Siblings, and Five with CF

“If you’re not happy and positive, who else is going to do it for you?”

Jojo Vang is an unquestionably optimistic person. Jojo explained, “I stay positive because I want to bring a good vibe to everybody. If I didn’t have cystic fibrosis, I don’t think I’d be the consistently upbeat person I am today.” He talked about how he loves the kayaking routes in Minnesota near his home, the ice-fishing trips with his family, and the exciting hunting adventures. You would never guess he is the third youngest in a family of fourteen children, five of whom have cystic fibrosis (CF).

Jojo’s parents immigrated here to the United States to raise their family. They have selflessly dedicated themselves to building their family here in the USA, despite the financial and cultural challenges they have faced. Jojo is not even sure how they have been able to care for all their expensive CF medication. This lead him to say, “They can barely speak English, but managed to raise 14 kids in the US.”

Jojo’s whole life has been centered around his family and their financial concerns. Jojo does many jobs to help make ends meet for his family. He works on his family farm, sells their crops at the farmers market, and works for Wells Fargo and FedEx. Ironically enough, the interview started with Jojo answering the phone while he was in a FedEx truck (do not worry, he was not driving). Jojo will do anything to help his family, sometimes even at the cost of his own health. Jojo explained this by saying, “I don’t go to appointments because of financial issues. I’m told that I’m covered, then I’ll get a bill for $200 for my visit a month later.” He talked about how his financial concerns are more pressing than his own health, “You have to understand, my health is relatively stable; and I don’t want to build up a table full of bills that I can’t pay for.” Jojo does this all so his family, specifically his siblings with cystic fibrosis, can have a better life.

The battle of fighting CF added a whole new layer of closeness between his siblings, especially his siblings with CF. “My third oldest sister, Mao, is like my mom,” as he half-grunted and half-smiled. Mao provides him with her leftover medication she doesn’t use, and she holds him accountable for showing up to doctor’s appointments.

Jojo understands why his sister finds his health so imperative. “My oldest siblings had it the roughest with CF,” he explained, “I was never truly aware of what CF was until I got older.” Jojo and his younger brother never had any serious CF related hospitalizations. This was not the case for their older siblings, as they were unfortunately all too familiar with them. Jojo recalled one jarring night in 2012 when his oldest brother, Pao, called him while he was getting ready to go to sleep. Pau asked to be immediately taken to the hospital. Jojo was half-way to Pao’s apartment when he received another call saying that it was false alarm. Jojo recalled thinking, “I was more disturbed by the unpredictability of the disease.”

“I was never truly aware of what CF was until I got older.”

Jojo described his second oldest sister, Mee, as playing the largest role in his perspective on growing up with cystic fibrosis. Mee was 26 years old when she passed away from cystic fibrosis due to lung failure. She was given the option to put her name on the transplant list, but the chances of receiving the transplant were not ideal. She decided not to put her name on the transplant list. Mee passed away in September of 2010, while Jojo was a senior in high school. “As the year was ending, I thought about how my whole family was going to be at my graduation. My older siblings were all there except for her…I wish she would have been there,” Jojo recalls.

Most of his life his only exposure to others with CF has been interacting with his siblings. Sharing his story enables Jojo to connect with the CF community and give him more optimism. For example, he was featured on the Cystic Fibrosis Foundation (CFF) patient spotlight page. From this, he has gained a sense of community with others fighting cystic fibrosis. “It felt great to receive other peoples’ support. It’s nice to hear ‘stay strong, keep your head up’ from my family. But, to hear it from random people I’ve never even met; that’s a whole new feeling,” he joyfully exclaimed. He has even met another girl with cystic fibrosis in the same hospital (University of Michigan) as him, with whom he has bonded over discussing their opinions on different doctors and nurses.

Jojo treated his story with the CFF as the launch-pad to his activism. Jojo has recently been more active than ever in spreading awareness of cystic fibrosis via social media. His main message is:

“Always live for today, and BE the change you would like to see. If you’re not happy and positive, who else is going to do it for you? Even at your roughest time, do what YOU find worthwhile.”

You can follow Jojo and his story here:
Instagram: @mrjojovanginsta

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Our Community Column is a home for thoughts and opinions of members across the cystic fibrosis community. Sometimes serious, every so often lighthearted, but always engaging. It is our duty and privilege to listen to these stories and to share them with others.