Daniel’s mother, Christine, considers him to be her “Special Little Boy.” Born premature after five years of infertility and miscarriages, Christine thinks of Daniel as her miracle.
Imagine her horror when her “Special Little Boy” got sick. With rash, fevers, and juvenile arthritis, Christine and her husband Will, knew Daniel had some kind of autoinflammatory disorder, but which one?
The answer came when Christine and Will took their very sick kid to Toronto’s SickKids. Armed with a team of at least 50 doctors, Daniel had test after test–from blood work to biopsies–to determine the cause of his symptoms.
“Man was he a trooper!,” writes Christine. “The worst part of each day was watching him struggle through each procedure.”
But the struggle didn’t end when the procedures did. When the doctor came back with a diagnosis of CAPS disease, or Cryopyrin-Associated Periodic Syndromes, with signs of Macrophage Activation Syndrome (MAS), the struggle had just begun.
How would Christine and Will get through their fears after hearing a CAPS diagnosis? By following these Three Rules:
1. Stop Googling
“It will only do for you what it did for us and that’s scare us senseless.”
2. Find Strength
“For us we turned to prayer, and many many others prayed with us. It was and is our only source of strength.”
3. Have Hope
“Everything we had faced up till now had led us here….The doctors have been marvelous but let me explain something, this is how at least in our lives God is real and actively working.”
Sure, Christine and Will are still scared for their son, and after his release from SickKids, they’ve had to figure out how to combat CAPS without a team of doctors right by Daniel’s bedside.
But Christine is thankful: After SickKids, she had a diagnosis and treatment for Daniel, and another baby–a girl–on the way.
As Christine closes out this particular CAPS chapter, she writes,
“It’s funny, now that I see it in writing it seems a little bit crazy, but this is our life, and we are so happy to be home. That in-between the moments of craziness we have moments of incredible joy.”
You can follow Daniel’s stay at SickKids through all four parts at Christine’s blog, “Trouble-Making with Daniel.”