A legacy for son

The room looked like any other.

The bed was neatly made with a fuzzy stuffed dog and cat waiting to cuddle on top, family photographs were stuck on a board, and toys were piled in the corner. Near the door hung a shaggy orange Tigger costume from last year brushing up against a metallic astronaut costume that was never worn.

Kerrie Roque’s eyes welled up as she pointed to a neatly laid-out outfit in patriotic colors.

“He was the happiest kid you could ever have, so we definitely felt lucky to have him,” Roque said. “He was a great kid.”

Dominic died Sept. 19 and never got the chance to wear his Flag Day outfit or Halloween costume. The day Dominic was going to wear his patriotic outfit, Roque kept him home from school. The normally energetic 7-year-old was feeling tired, an unusual thing, and had a minor fever. By Saturday morning, his fever had peaked and he was taken to the emergency room. Dominic never came home.

Dominic had an autoimmune disease that cut his life short. The rare disease left his parents and doctors in uncharted territory. Although research and funding will no longer help Dominic, his family wants to make sure others won’t have to go through the same thing they did.

“I would like to make a little bit of difference in either finding a cure or finding a better kind of treatment,” Roque said.

Dominic had Takayasu arteritis, which caused his blood vessels to narrow and caused a heart abnormality. The disease is rare and its cause is unknown, said Grace Kasamatsu, Dominic’s doctor, whom he called “Dr. Kats Moo.” Kasamatsu said she had never seen a patient with it before.

The family is raising money for research for the disease and has already raised $3,000 through its website for autoimmune diseases, Roque said.

“It’s one of the most rare diseases. It’s not in the forefront of people’s minds,” Kasamatsu said.

Kasamatsu said Roque’s determination to raise money for the disease will not only help the research, but will be a good legacy for Dominic.

“What she’s doing is quite amazing, and I’m really proud of her for it,” Kasamatsu said.

When Dominic was first diagnosed with the disease at 2 months old, doctors were unsure how to proceed, Roque said. There was no documentation on how to treat someone like Dominic, she said. He spent a month in intensive care, and doctors told the family he wasn’t going to leave. They had him baptized, and doctors urged them to sign a “do not resuscitate” form, she said.

“I was devastated. We were all devastated,” she said.

He did get to go home, after doing chemotherapy and steroids treatments. Dominic continued chemotherapy when he went home, but the treatments kept him constantly sick and made him susceptible to other illnesses.

Roque said she quit her job to be home with Dominic, and her husband took on a second job to support the family.

“It was really challenging, but it was so worth it,” she said.

The time at home and in the hospitals left Dominic significantly developmentally delayed, and he was diagnosed with high-functioning autism. Despite the obstacles, Dominic caught up and graduated out of special-education classes the year he died.

Julianne Perrigo, Dominic’s pre-kindergarten and kindergarten teacher, said she was excited for his achievement, but sad to see him moving on.

“He was an amazing little guy,” Perrigo said. “He was so smart. He could tell you how to get to Palm Springs on the freeways.”

Only days after starting at his new school, Dominic was taken to the emergency room and, a week later, died in his mother’s arms. Doctors are unsure exactly why he died, but his blood vessels were leaking, which caused a huge clot behind his heart, Roque said.

“He will be greatly missed and we will always, always remember him,” said Perrigo, one of more than a dozen school officials who went to Dominic’s funeral.

Dominic called himself a “funny, silly boy” and liked to read, bike and play Wii with his older brother, David.

“He was just a bright spark,” Roque said. “He just really packed a lot into his seven years.”

The family wants to start fostering children and is applying for a nine-week training course next week. Roque said they want to give back and have been considering fostering or adoption for a while, but want to get through the grieving process before considering adoption.

“We’re going to start fostering. We don’t want this to be the end of our family,” Roque said. “We just feel like it’s something we need to work toward to put our family back together.”

HOW TO HELP

Donate at www.dominicdonations.blogspot.com.