Despite showing no signs of illness, Nicholas Dean, 9, had double pneumonia and was put on life support as a baby. Soon thereafter, “Nicky” was diagnosed with Job’s syndrome, becoming one of the youngest people to ever be diagnosed with the primary immunodeficiency.
“I was in a puddle,” Nicky’s mom, Donna Michele Toyama, says about the moment she found out about her youngest son’s diagnosis. “You could’ve literally picked me up with paper towel. I was devastated. I had five children, and I didn’t know this kind of world existed.”
Immune deficiencies leave patients vulnerable to infections and even certain cancers that can easily become life-threatening. And while there’s no standard cure for patients with Job’s syndrome, which can also cause skull malformations and other issues, there was hope for effective treatment at the National Institutes of Health through a clinical trial.
“NIAID is conducting a natural history study that follows about 120 patients with this rare primary immunodeficiency, ranging in age from toddlers to those in their 60s,” says Dr. Alexandra Freeman, a staff clinician in the Laboratory of Clinical Infectious Diseases, Division of Intramural Research, National Institute of Allergy and Infectious Diseases. “We not only screen for complications of the disease but also provide education about the diverse symptoms of Job’s and therapies that can help prevent the difficult skin and lung infections we see in these patients.”
At 3 years old, Nicky and his family made their first trip to Bethesda, Maryland, where they stayed at The Children’s Inn while away from their home in Glendora, California. Nicky quickly fell in love with The Inn, making it easy for his mom to convince her young son to board a plane for visits to the NIH for checkups.
“He just loves to be with other children at The Inn, where he doesn’t have to worry about his condition and how he’s judged,” Donna says. “Nicky also really likes the arts and crafts, and the game room. Everything you have at The Inn, he does, and he does so happily.”
As a thank you to The Inn, Donna, a talented seamstress and quilt-maker who makes about 20 quilts a year, made a quilt with a unique design created specifically for The Inn, which she graciously donated to The Inn.
One side of the quilt showcases artwork created by young Inn residents. To accomplish this, Donna transferred scanned images of the children’s art onto the fabric she used. The quilt is mostly green and includes a tree to symbolize the relaxing natural atmosphere of The Inn’s outdoor areas.
Since taking up quilting 25 years ago, Donna has donated a number of quilts to nonprofits and causes she believes in. Last year, she made 60 animal masks for Children’s Inn residents to play with.
Nicky and his mom come to The Inn about once a year for in-depth medical checkups at the National Institute of Allergy and Infectious Diseases (NIAID). Since 2012, they’ve come to The Inn six times, staying for several days each visit.
“I just wanted to say thank you, to give back and teach my children to give back,” Donna says. “The Inn has given so much to us, and it’s the least we could do. I can’t say that everything is going be OK, but it seems to be OK when you’re at The Inn. It’s peaceful, and you can just kind of breathe when you’re there. Everyone is there to help you.”