Abdullah suffered from epilepsy and hypomyelination, a neurodegenerative disorder, Nimer said. While he received treatment in the U.S., Swileh was unable to be with him for months, though she tried several times to have her visa waiver request expedited.

Swileh was finally granted a visa after attorneys for the family filed a lawsuit in federal court Dec. 17 against Secretary of State Mike Pompeo, Department of Homeland Security Secretary Kirstjen Nielsen, Assistant Secretary of State for Consular Affairs Carl Risch and Consul General at the U.S. Embassy in Cairo Lisa Vickers, among others.

The contents of the lawsuit have not been made public, but it sought immediate relief in the form of the visa waiver, which has been granted, as well as damages, Nimer said. A State Department spokesperson declined to comment to ABC News on the lawsuit filed earlier this month, citing department policy to not discuss pending litigation.

\"PHOTO:
CAIR, Sacramento Valley
PHOTO: Abdullah Hassan, 2, who suffers from a genetic brain condition, is pictured at UCSF Benioff Children’s Hospital in Oakland, Calif., in an undated handout photo from the Council on American-Islamic Relations' Sacramento Valley chapter.
>

Nimer said that rather than amending it, she moved to voluntarily dismiss that lawsuit late last week because the visa had been obtained. Nimer said the family plans to file a lawsuit in California, where Hassan and Swileh live, against the same parties and seek damages.

\"Getting damages from the government is not easy to do, but the important point about is that their behavior was so egregious, I just don't think it should be let go,\" Nimer said. \"Whether we're ultimately successful or not, I think bringing attention to the issue is important. There has to be some changes in the waiver process, it just can't be like this.\"

\"PHOTO:
AP
PHOTO: Shaima Swileh, center with her back turned, is greeted by supporters after arriving at San Francisco International Airport in San Francisco, Wednesday, Dec. 19, 2018.
>

Nimer told ABC News earlier this month that Swileh was first interviewed by U.S. consular officials for a visa in November 2017, when an injunction on Trump's ban had been put in place, so she could travel with her husband and son as they sought treatment for him.

The U.S. Embassy in Cairo did not make a decision on Swileh's visa until last December, when they denied her on the grounds that the ban on travelers from Yemen was in effect once again after the Supreme Court allowed the ban to go into effect on Dec. 4, 2017 even as legal challenges to it made their way through the courts.

Swileh applied for a visa waiver, and requested that it be expedited several times, Nimer said, adding that the family emailed embassy officials 28 times to check on the status of her application and explain how dire Abdullah's health had become.

\"They repeatedly emailed, begging and pleading and detailing that their son was getting sick, and he was getting worse, and we have to travel. They mention that he was still breastfeeding and didn't want to be separated from his mother,\" Nimer said. \"And every time the answer was simply, 'Your case is in administrative processing.' You can't even get a human response.\"

\"PHOTO:
AP
PHOTO: Shaima Swileh, center, stands with her husband Ali Hassan, second from left, after Swileh arrived at San Francisco International Airport in San Francisco, Wednesday, Dec. 19, 2018.
>

Finally, Hassan decided to bring Abdullah to the U.S. alone in October to get medical treatment. But Swileh was still waiting on the visa waiver to join them, even as Abdullah's health worsened, Nimer said.

Hassan began working with CAIR to try to raise awareness about his wife's case. Nimer began representing the family on Dec. 14, sending inquiries to the U.S. Embassy in Cairo and the State Department's LegalNet, a resource for attorneys.

\"PHOTO:
CAIR, Sacramento Valley
PHOTO: Abdullah Hassan, 2, who suffers from a genetic brain condition, is pictured at UCSF Benioff Children’s Hospital in Oakland, Calif., in an undated handout photo from the Council on American-Islamic Relations' Sacramento Valley chapter.
>

\"We specifically said, 'This is a matter of life and death at this point, and it needs to be expedited.' And the embassy's email was exactly the same, 'It's in administrative processing.' And we actually told them in that email we were planning to file a lawsuit, just kind of hoping that would prompt them to get moving on it,\" Nimer said.

Nimer said the family has \"suffered needlessly\" over more than a year, and especially during the past two months as Abdullah's health worsened in the U.S.

\"They lost two months together as a family during the most important time, and there is just no way to ever fix that,\" Nimer said. \"I hope that this case can be a catalyst for some type of change. There is no transparency, there is no real process here with [the waivers].\"

\"PHOTO:
Daisy Nguyen/AP
PHOTO: Muhammad Younus, the imam of the California Islamic Center, addresses mourners at the funeral service for 2-year-old Abdullah Hassan in Lodi, Calif., Dec. 29, 2018.
>

Al-Akhras said she hopes the family's case brings people together to push the government to end the travel ban entirely.

\"It's sad that it took a little boy's life to shed some light on this racist policy,\" Al-Akhras said. \"It affects people of all different ages from all walks of life ... You have people who are in very terrible situations, war situations, they don't have anywhere to turn.\"

\"This is his legacy at this point. He didn't pass away in vain,\" she added.

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