By Crystal Duan
Every Friday for years, the needles took up most of the Smiths’ day.
Out the door they’d go by 6:30 a.m. each morning, driving south to Children’s Hospital Los Angeles.
Then, Violet, 10, and Ian, 8, would sit in a hospital room with a daunting IV before them, ready to help them, even if it’d bore them. They’d decide that day where in their bodies the needles would go.
They were retractable and could be inserted in the smallest of veins in their little bodies. Violet always went with the back of the hand, where there were the most veins, while Ian might pick his elbow.
“I don’t like it in my ticklish spots,” Violet said. She’s particular about it, and experienced, because each week at CHLA, she and her brother are getting intravenous treatments of blood plasma and medication to receive antibodies they lack.
The Smith children have a primary immunodeficiency disease, a genetic condition that does not allow their bodies’ immune systems to function properly and fight off bacteria. PI makes the children especially susceptible to infection and recurrent health problems.
Although there is no cure for the disease, regular blood infusions allow the children to live normal lives, thanks to plenty of those helpful antibodies.
Recently, they were able to begin doing so from the comfort of their own homes.
These days, Violet and Ian walk the house on Friday afternoons with a portable pump that keeps smaller needles providing the infusions.
They used to sit in the hospital rooms for five to seven hours, trying to entertain themselves with puzzles, books, television, Xbox or coloring books while waiting to regain the energy they’d been seeking all week.
“It takes half as long now,” Violet said. “And if you’re used to it, you could even go shopping with it, walking with it.”
The injections always hurt for two minutes in the spot they’re placed. Violet said the pain then turns into an itch.
“But Ian,” she said, pointing at her brother, “Ian is a lot braver than me.”
He’s used to it, as he and Violet have both been in and out of hospitals for various infections since they were each a month old.
“It’s been so long, we don’t know anything different than this,” said their mother, Barbara Smith.
“As a mom, you want to fix things if your kids are in pain,” she said. “We’ve felt helpless for so long in finding a cure and seeking treatment.”
The Smith kids’ blood transfusions are imprinted in their routine, just as much as going to school and playing with their pet guinea pig Haimish.
But Haimish is happier now that the children are home every Friday, Violet said. There’s hope on the horizon.
And for the sixth year in a row, Barbara is putting on a blood drive in support of kids with the same PI disease.
“You always wonder, ‘How can I help my kids?’” she said. “And I think teaching them that this isn’t just an obstacle, there’s ways to make it better, is important, and hosting a blood drive is an important way to do that.”
Partnering with CHLA, the drive will take place on March 2 from 8 a.m. to 2 p.m. at the Grace Baptist Church Conference Center, located at 22833 Copper Hill Drive. To schedule an appointment for the blood drive, visit CHLADonateBlood.org and enter Sponsor Code: GRACEBAP or contact Barbara Smith at 661-373-8458.