At only 3 years old, Noah Galloy is lucky to be alive. While the Plainfield resident was born healthy, at 6 months old, he became a sickly baby.
Ear infections would keep coming back after being treated with antibiotics. Doctors took out his tonsils and adenoids, believing he would be fine after the surgery. Instead, he got worse.
“Everything went haywire in his body,” said his mom, Jenn. “Things were stirred up by the surgery.”
What doctors thought was leukemia was finally identified as a rare bacterial infection called Atypical Mycobacterium Avium Complex. And to top it off, Noah also suffers from an immune deficiency that keeps his body from fighting the infection.
The IL-12 Immune Deficiency came from his parents who both carry a rare defective DNA sequence. Both Noah and their other son, Braden, suffer from it. Braden, who is 12, suffers from a partial deficiency.
“The doctors not knowing what it was was scarier than having a diagnosis (of something like leukemia),” Jenn said.
Earlier this year, Noah underwent a bone marrow transplant. His family is waiting to see what the future will bring.
His mother found support and help from the Immune Deficiency Foundation through another mom. Amy Walsh also has a child with a primary immune deficiency (one that a person is born with rather than acquired through treatments like chemotherapy that suppress the immune system).
While both women want to see money to fund research, they also hope to help the thousands of people who live with an immune deficiency but are unaware of it. About 250,000 people in the U.S. have a diagnosed primary immune deficiency.
“IDF is pushing to look beyond the horses (the obvious) and look for zebras,” said Walsh, who lives in Elwood and serves on IDF’s national board.
The organization is starting a series of walks around the country, the second of which will be in Wheaton. They hope awareness will change the way people are diagnosed.
“It’s rare but not as rare as people imagine,” said John Boyle, the development director for IDF. “There are a lot of stories from our patient community how doctors didn’t know to look for this.”
The organization wants to encourage people to ask questions when they are seen for a problem and the treatment isn’t working.
For many people, the idea of an immune deficiency conjures up memories of David Vetter who was known for the bubble he lived in for his 12 short years. But many people live with immune deficiencies without the people around them realizing it.
Boyle is one of those people. Diagnosed at 6 months old, he is 35 and knows he has to take care of himself to stay healthy and fend off what many other people take for granted.
“I’ve lived an incredibly normal life,” he said.
His experience also allows him to help the foundation in other ways.
“It takes all kinds of people to help a family,” he said. “I’ve actually lived through it.”
For the Galloys, their children’s diagnosis is so rare that doctors were at a loss as to how to help them.
“They are writing the history books on how to treat Noah,” she said.
Walking for IDF, the organization that helped her, is one way she gives back.
“I wanted to return the favor, to help in any way I could,” Jenn said.