As school starts, infection control is important for this South Jersey family
PITMAN, N.J. (CBS) -- Many children are getting ready to head back to school. For those with immunity problems, it can be scary, especially for their parents.
We hear it all the time: "If you're sick, stay home." That's especially important in school because infections can spread quickly.
It's a message that's critical for one South Jersey family.
Ashton James, 5, is busy on the playground in Pitman swinging and climbing – no signs of a potentially life-threatening disease he has called primary immunodeficiency or PI.
"Emotionally, it's really difficult," Regina James, Ashton's mom, said.
With a dysfunctional immune system, Ashton James is vulnerable to infections and spent years being sick mainly with respiratory illnesses.
Patients with PI often refer to themselves as zebras because obvious signs like stripes are often missed by doctors in diagnosing this.
"Typically with PI it takes about five to eight years to get a diagnosis," Regina James said.
Regina James did a lot of research on her own as she was frustrated waiting to find out what was wrong with her son, and was insistent with doctors who finally diagnosed PI within a year.
"I feel like moms turn into private investigators when things go wrong with their kids," Regina James said.
To pump up his immune system, Ashton James gets weekly immunoglobulin infusions given by his mom at home.
Even with the infusions, he's still vulnerable to infections, which is why the family is trying to raise awareness with the Immune Deficiency Foundation for their annual walk at the zoo.
"For the community to understand that the importance of -- if your child is sick they should really stay home," Regina James said.
She's says it's an especially important message now, with school starting and Ashton heading to kindergarten.
"The only thing I'm excited about is to wear my headphones," Ashton James said.
The family says Ashton's emotional resilience has helped keep them strong as they continue to fight to make PI easier to spot – like a zebra's stripes.
Ashton has what's considered a rare disease, so research is limited, but there are different kinds of treatments. And right now, doctors say he's doing well and should be fine in school.