Living with NOMID:Quinn's Story. Diagnosed
in 2008 at one year old.

"Quinn was delivered immediately via emergency C-section, 6 weeks prematurely. Approximately 48 hours later, her condition stabilized in the neonatal intensive care unit, or NICU. When she was able to breathe on her own, it felt like we could finally breathe. But that’s when we first noticed a peculiar rash covering our baby’s face and body. Quinn was also running a fever. The neonatologist couldn’t explain the cause. She said it was unusual for babies to be born with allergies, but she was treated with acetaminophen and an antihistamine anyway.

Quinn was discharged after 10 days with instructions to follow up with our pediatrician as soon as we got back to New York. But that same night, the rash came back—with a vengeance. It looked like a horrible case of hives and covered her little body from head to toe. The fever returned as well, and Quinn was so lethargic; she could hardly even cry. Her eyes were lackluster. Terrified, we rushed to the hospital and she was admitted for intensive care."

"The week of Quinn’s 1st birthday, she again fell terribly ill. Her cry sounded strange, and when I went to get her from the crib she was purple and swollen all over, like a balloon. Our doctor met us at the emergency room entrance and once again, Quinn was whisked out of my arms as they rushed her inside. Time was critical because her brain was swollen. Because no one knew what was causing these problems, the staff had to take every safety precaution. Everyone wore masks and protective clothing as if Quinn had a contagious disease. It was surreal. Thankfully, she wasn’t contagious, but she did have a severe inflammation that threatened her life. When her condition stabilized after a few days, our doctor finally found the final clues he needed. He revealed that although Quinn’s gene test results were negative, and she didn’t have the telltale eye problems, other symptoms pointed to a rare autoinflammatory condition called NOMID.

It was the first we had ever heard of this diagnosis. He explained that the only available treatment at that time, anakinra—available today as KINERET—was in clinical trial through the National Institute of Health. He told us it would be a daily injection just under the skin and that there were potentially serious side effects, which include serious infections, allergic reactions, lowered ability to fight infection, and low white blood cell counts.

He didn’t sugarcoat anything. The injections were painful to receive and injection site reactions and side effects could be a problem. It was a treatment that she may have to continue for the rest of Quinn’s life. At this point, however, there was nothing we wouldn’t have tried if it meant there was even a possibility it would help our daughter."

"Because I want to empower Quinn when it comes to her injection, I try to give her as much control over the process as possible. It’s important to rotate injection sites and I’ve always kept a chart on the refrigerator to keep track of that. Now, she’s old enough and has been trained on how to give herself an injection on the front of her thighs. So, on the days when that site is appropriate, Quinn will self-inject. She’s also keeping her own chart these days. She decorates them with drawings and stickers and little pep talks to herself, 'Good job, Quinn!'

Everyone needs to work out a daily injection routine that works for their family. Quinn decided that she wants to play for a little while before her shot and after she wakes up, so we schedule that in. I make sure to pop in and give her notice that she has X number of minutes before her injection, so she can prepare. Quinn decides which room she wants to be in for the injection and picks which of the appropriate body sites will be used after double checking the rotation chart. After the injection, Quinn likes to have some time alone, and then she gets ready for school."