Newport Beach students to screen documentary on children with chronic illnesses at City Hall

Sage Hill junior Saara Dang has watched her little brother, Kavan, go to and from treatments for his chronic kidney condition ever since he was diagnosed with focal segmental glomerulosclerosis when he was 4.

The disease causes scarring in the filters of the kidneys, which makes it difficult for them to filter waste and can lead to kidney failure.

Kavan never complained, Dang said.

He never said he was sad or that he was tired or felt sick.

“He just bottled it up and didn’t share how it felt,” Dang said in a recent interview. “But it was OK if he could. It was OK to feel those negative thoughts and not feel happy 24/7. We didn’t want him to feel alone, but he’s never really connected with other people with his condition and it got really serious over the past year.”

It was then that she, and Orange County School of Arts sophomore, Rohan Soni, decided to take it upon themselves to learn more about the mental toll that chronic illness takes on children. Soni and Dang’s families were close, and the two grew up together, so Soni was aware of Kavan’s condition too.

“Dear Me” co-founders Rohan Soni and Saara Dang, from left, worked together to make a mini-documentary and a phone app focusing on chronic illness and mental health in young children. The pair will screen the show in the Newport Beach city hall community room on Friday.

(Don Leach / Staff Photographer)

Their investigation eventually laid the groundwork for their new mini-documentary, “Dear Me,” which will screen for friends and family at the Newport Beach Community Room at the Civic Center on Friday from 6 to 8 p.m.

The documentary is roughly 40 minutes long and the project is supported by the Dragon Kim Foundation, an Irvine nonprofit that looks to encourage young people into leadership positions. Dang and Soni are both fellows of the foundation.

“We wanted to know: Can we help [Kavan] and help kids like him?” Dang said.

Planning for “Dear Me” started in December but didn’t really find traction until about March and April of this year. Soni said he and Dang liked to run things on a “tight” schedule and that post-production editing finished in early July with the screening Friday only barely preceding their graduation from the Dragon Kim Foundation in August.

Soni said the project went through several iterations. At first, they thought about making it an Instagram page or tackling it from another angle, but the documentary manifested itself as the two started to reach out to experts to learn more.

“It was kind of about our journey. We’re not doctors. We don’t know the ins and outs, but it’s taking a toll on his mental health. What’re we going to do?” he said.

Dang said the documentary is divided into three parts. The first third of the film focuses on Kavan, while the second focuses on interviews with doctors and children with other chronic illnesses to see and hear what they thought would be most helpful to them in expressing their feelings.

Experts said journaling was a good and productive way to do so, but many of the children they interviewed argued that journaling their feelings often felt like homework, which wasn’t an appealing way to express themselves when they were going through so much.

“Dear Me” co-founders Rohan Soni and Saara Dang, from left, look up at a display at the Newport Beach Civic Center Community Room on Thursday. Their short documentary will be screened at the same location Friday evening.

(Don Leach / Staff Photographer)

So, as part of addressing that, the third part deals with the app that the two made, “Dear Me,” carrying the film’s title.

Soni said he had experience in programming apps, and the idea to make one to facilitate the journaling process came from Dang’s interest in social media. By making it feel more like a social media interface, the hope was that people using it might be more likely to do it or find it less daunting, though they are working on figuring out whether or not the things written into the app should be shareable or not.

The app is not yet fully live as it undergoes review, but Soni and Dang said they are hopeful it will be available on most mobile devices soon.

The two said they decided to hold their documentary’s screening at the Newport Beach Civic Center because they felt it was in the best place to allow as many people that they know to come as possible.

Dang said Kavan, now 13, has already seen the film. He found it embarrassing to see himself on the screen but was otherwise approving of the work, his sister said. She sees the film as a way to connect people.

Soni said he hadn’t actually expected to see “Dear Me” through to completion and described the process as “surreal.” His hope is that the film will encourage others to use the “Dear Me” app and that it helps bring awareness to mental health issues children facing chronic illnesses may experience.