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By Melanie Padgett Powers, MANAGING EDITOR

As a kid growing up in Nepal with hemophilia A, Sushant Sharma Bhattarai, now 22, wasn鈥檛 allowed to run around, ride bikes or play sports. Factor replacement therapy wasn鈥檛 available in his country, and the risk was just too great.

Later, living in California as a teenager, he still didn鈥檛 play sports or go outside much. He had severe arthritis in both legs, and the muscles in his right leg had never fully developed. Instead, Bhattarai turned to videos. First, he watched movies and YouTube videos and played video games. But then he started filming himself playing video games, something he saw other people doing and sharing on YouTube.

鈥淚 wanted to do that too because it looked pretty fun, and it also looked like a great way to reach out to other people,鈥 he said.

Later, in community college, he took classes in a lot of subject areas to see what he liked. 鈥淎nd film really stuck out to me,鈥 he said. 鈥淭he subject of storytelling and imaging really struck me, so that鈥檚 how I knew that鈥檚 what I wanted to do.鈥

Bhattarai graduated in May 2021 from the University of California (UC), Santa Cruz with a bachelor鈥檚 degree in fine arts and a minor in economics. He began working for a company that is connected to Netflix. One day he would like to have his own video production company and make documentaries and films.

Bhattarai has been making short films for a few years, first teaching himself, then learning through his college classes. His latest creation is a 13-minute film called 鈥淏leeders鈥 Mums.鈥 (Watch the film at bit.ly/BleedersMums.)

鈥淚t鈥檚 about these two mums whose kids and whose family have bleeding disorders,鈥 he explained. 鈥淚t spans from their grandfather to their father to their kids now having those bleeding disorders. And it just focuses on how mothers leave their life behind to support their family. … For mothers, just handling a normal family is pretty hard, but on top of that, having this bleeding disorder throughout your family is pretty intense. And taking care of that is really hard so I wanted to cover that in a documentary.鈥

The Bleeding Won鈥檛 Stop

Bhattarai grew up just outside Kathmandu, the capital of Nepal, in a valley surrounded by the Himalayan mountains. He lived with his pharmacist dad, schoolteacher mom and older brother. No one in his family had a bleeding disorder.

When he was nine months old, Bhattarai fell on some stairs and cut the inside of his lip. In a story familiar to a lot of families with undiagnosed bleeding disorders, the wound would not stop bleeding. His dad took him to the hospital where he worked.

鈥淭hey gave me all their regular medications that would have stopped me from bleeding,鈥 Bhattarai explained. 鈥淏ut after two weeks I was not able to stop the bleeding; the blood would not clot.鈥

He was then transferred to a bigger hospital in Kathmandu City. And by luck, a nurse working there happened to have someone in her family with hemophilia. She told Bhattarai鈥檚 dad that his son could have the disease. The little boy鈥檚 blood was sent to India to be tested. While they waited, Bhattarai鈥檚 father donated his blood to his son.

The diagnosis came back: hemophilia A. The Kathmandu hospital had a hemophilia care unit, but plasma infusions were the only treatment. It was expensive, and insurance wasn鈥檛 available. Bhattarai鈥檚 family had to pay for any treatments.

His family and other families with bleeding disorders would wait 鈥渦ntil it gets to be an emergency, or else they just try to stay home and get rest and get iced up,鈥 he said. It was important to try to prevent injuries and bleeds as much as possible.

When Bhattarai was about seven years old, he fell from a swing at school. He had a large bleed on his right side and in his right knee joint. His parents took him to the hospital, where they had only some expired factor products. He was given the treatment anyway, but it didn鈥檛 do much to clear the bleeds.

From then on, his parents restricted his activities. He considers it an accomplishment that he was able to go to school, usually only when he could hitch a ride on a classmate鈥檚 bicycle. During his childhood, he developed target joints in his left ankle and right knee. He spent a lot of time at home with his mom, who had quit teaching and started a small orphanage at their house for other kids in need.

Looking for Treatment

Twice as a child, Bhattarai and his father traveled to India where Bhattarai spent six months total doing physical therapy (PT). But there was still no treatment, and the PT didn鈥檛 help much. Bhattarai鈥檚 parents began to talk of going to the United States, where they had family. They were connected with the Mayo Clinic in Rochester, Minnesota, and were offered a spot to stay for free at the nearby Ronald McDonald House.

In 2011, at age 13, Bhattarai headed to Minnesota with his father for surgery. 鈥淲hen I came to the U.S., my problem was my right knee was bent to 120 degrees and I was not able to straighten it out.鈥 Mayo surgeons removed a piece of bone and inserted screws that enabled Bhattarai to bend his knee again. He underwent PT and was given prophylaxis factor treatment the entire six months he was there. As he prepared to return to Nepal, he was given a big box of factor to ration out when he got home. (The factor lasted more than a year.)

However, his dad stayed behind in the U.S., moving to California to be near family, and starting a plan to move his entire family to the States. In 2013, the family was able to obtain visas to move to the U.S. based on Bhattarai needing better hemophilia treatment.

In Nepal, Bhattarai had finished seventh grade, but because he was 14, the school system placed him in high school. He was suddenly a sophomore who knew only a little English. He鈥檚 thankful his school had a program called English Language Development. Known as 鈥渟heltered instruction,鈥 it taught him and his classmates鈥攚ho were from all over the world鈥攈ow to read, write, speak and understand English.

He gradually became fluent and caught up with his classmates. After graduating high school, he headed to community college for three years before heading to UC Santa Cruz. 鈥淐oming from a Nepali background, there鈥檚 this thing that you have to go to college, you have to always finish your education,鈥 he said. (He also had right knee surgery in high school and then right knee replacement surgery during community college.)

Teaching the World

Through his films, Bhattarai wants to educate people around the world about hemophilia and also show what it鈥檚 like growing up with a bleeding disorder in countries that don鈥檛 have access to prophy or hemophilia treatment centers.

鈥淚n Nepal, not a lot of people know about hemophilia,鈥 he said. 鈥淚鈥檓 imagining that there are a lot of countries where a lot of people who have hemophilia, or whose kids have hemophilia, don鈥檛 even know they have hemophilia鈥攐r they don鈥檛 even know what the proper treatment is or how to help their kids.

鈥淔or me and my family, no one knew anything about hemophilia. And now that we know something about it, I want to reach out to all the people who don鈥檛 know about hemophilia or about these bleeding disorders and I want to make them aware.鈥


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