David Law and Veena Sison-Law cherished every day for the past four years they got to spend with their daughter, Violet. They embraced all the joys of being her parents — and also carried the pain.

After years of battling GM1 gangliosidosis, Violet Law died at 4 years old on Saturday, Nov. 11, surrounded by her family.

“It still is surreal at times after how sudden it was and after our whole lives have revolved around her the last couple of years,” said David Law, who is a physician at Long Beach Memorial and St. Mary Medical Center.

GM1 Gangliosidosis is a rare, neurologically degenerative disease that affects the brain and spinal cord, impeding one’s ability to move, eat and speak. The disease currently has no FDA-approved therapies and is fatal in children.

Violet was still going to preschool but had difficulty handling runny noses and swallowing saliva and had a feeding tube from her nose to her stomach. There were nights in her last weeks, during flu season, when they had to stay up to help her breathe.

“We thought everything was fine,” said Veena Sison-Law, who is also a physician. “But I guess it was just too much… we were hoping we would get maybe a few more years.”

But the Laws also understood how the disease would progress, and as Violet showed signs of regression over time, her parents lived waiting in “anticipatory grief.”

Despite their loss, he said they spent a last “beautiful summer” together with their daughter. She loved going to Disneyland, meeting its princesses and riding “Pirates of the Caribbean.” She enjoyed music, swimming in the pool with her parents and laughed during her last Halloween parade.

Violet also found joy in being around people, said Veena Sison-Law. In her preschool program, she perked up when she heard other kids. She did hand-over-hand arts and crafts and celebrated her 4th birthday with her classmates.

According to Veena Sison-Law, Violet also took much after her father.

“She has this personality, very sassy,” said Veena Sison-Law.

A favorite toy of Violet Law who recently died of a rare disease called GM1 gangliosidosis in Los Angeles, Thursday Nov. 30, 2023. Photo by Thomas R. Cordova.

Learning to be parents of someone with a rare disease became part of the Laws’ daily lives, but through the CureGM1 Foundation, which David Law is now a board member of, they found support from a community of parents with children who were also afflicted.

Through the foundation and UCLA, they were able to put Violet on medication that was in a clinical trial in an effort to clear toxins affecting her brain and development, which was a “godsend” for the family.

David Law said after the official trial, they saw signs of happiness and laughter in their daughter.

“We do believe the experimental medication and the clinical trials did give us these beautiful two years of happiness,” David Law said. “Even up to the week of her death, she was still smiling.”

During their time with Violet, the Law family has raised more than $180,000 for medical research on GM1 gangliosidosis with the help of David Law’s fraternity friends at UC Berkeley, Pi Lambda Phi.

“We took every day as a blessing,” said David Law. “Yes, it is terrible. But there are a lot of beautiful things that came out of it.”

In September, the Laws welcomed a baby boy, Derek Law, into the world, who is free from the disease. The siblings were able to spend two months together before Violet died.

“I think she was waiting for him,” said Veena Sison-Law.

As they navigate being both new and grieving parents, the next step, after time is to continue to be advocates, increasing awareness of the disease and funding for research and treatments.

David Law has given lectures and talks and media appearances among other things as part of his new mission. He has gone as far as the state capitol, getting Sen. Steve Padilla from San Diego to present a resolution to recognize GM1 Gangliosidosis Day on May 23 in California.

“It lights our fire to make sure that kids with this disease in the future don’t have (it), or have an easier time. And eventually, the eradication of the disease,” David Law said.

GM1 gangliosidosis still goes severely undiagnosed or misdiagnosed, and over 50% of those with the disease die before their 5th birthday.

The Law family plans to help provide support for parents of kids with the disease as they have received it in their time of need. They continue to tell Violet’s story to help other children and honor her memory.

“We’re grieving,” said Veena Sison-Law. “But we’re grateful.”

More information on GM1 gangliosidosis and the Cure GM1 Foundation can be found here.

Maison Tran is a fellow at the Long Beach Post. Reach him at [email protected].