I didn’t know what to think when my 4-year-old daughter first became sick. She was suddenly in pain all the time, unable to walk up stairs, and unwilling to play with her friends. Her wrist had frozen up completely; her neck didn’t seem able to move. And all I knew was my little girl was struggling through something I couldn’t help her with.
Neither could the doctors, initially. We went through months of not knowing and invasive tests, checking off things she didn’t have. It wasn’t meningitis. It wasn’t leukemia. It wasn’t tumors on her brain stem.
Eventually, we came to the truth: My daughter has a rare autoimmune condition called juvenile idiopathic arthritis. In laymen’s terms, this means her immune system gets confused and attacks and destroys her joints. Her own body fights against her. To handle it, she gets six injections a month, consisting of two different medications that both weaken her immune system. One of them is a chemotherapy drug I’ve been told I shouldn’t handle if I were to ever become pregnant. She’s also had to endure several rounds of steroid therapy, and she puts her arm out willingly for quarterly blood draws. There are the occasional flare-ups that riddle her little body, now 8 years old, with pain. But for the most part, the medications do their job and allow her to run and play like a healthy kid.
Through conferences and camps, we came to know a few other families raising kids with my daughter’s condition. But due to age differences or distance, there was no one my little girl was able to connect with on a regular basis. Until we met Gwen Stacy.
We found her at the animal shelter on my little girl’s sixth birthday. Gwenny was among a group of blond puppies who had been found living under a shed. While they looked like healthy, active pups—vying for attention from anyone who dared pass by their kennel—the sign introducing them said the shelter had reason to believe these puppies might develop skeletal and joint abnormalities. Arthritis was listed as one of the possible issues they might develop as a result.
“Mom, she’s going to have arthritis like me,” my daughter said, pointing at one of the puppies who hung back from the kennel door, appearing more mellow and less interested than the rest. Technically, the sign was referring to the more commonly experienced wear and tear arthritis that occurs as a result of age and joint abnormalities—not the autoimmune condition my daughter has. But that didn’t matter to my little girl. All she saw was that word. “We have to take her home. No one will know how to take care of her better than I will.”
We already had a dog and a cat at home. I was single, self-employed, and caring for a chronically ill child. But I couldn’t say no to the look of determination in my daughter’s eyes. We named our new pup in honor of the superhero phase my daughter was going through: Gwen Stacy aka Spider Woman, herself a regular girl with an extraordinary condition. We took her home and introduced her to our zoo.
Gwenny seemed like a normal puppy at first—quick to pee all over the carpet, eager to test the boundaries of our other dog, and excited to meet anyone willing to play. It wasn’t until she was about 6 months old that we started to notice some of the skeletal and joint issues the sign on her cage had warned us about. As she grew, it became apparent that her proportions were a bit off—her legs too short for her wide body, her knees often bending in as she walked or sat around. Then, she started experiencing bouts of limping, lasting a week or two. The first few times it happened, I took her to the vet. X-rays revealed nothing. We hoped it was just the “abnormalities” and growing pains.
But the problems persisted. Eventually, the vet referred us to a specialist who confirmed that our Gwenny girl was a mess: She had hip dysplasia and shoulder dysplasia. The doctor suspected she had autoimmune arthritis, too.
This was a surprise. While we’d been told arthritis might develop eventually with wear and tear, autoimmune arthritis was something else entirely. It was essentially the same disease my daughter had—just in dog form.
My little girl cried, heartbroken at the thought of her dog hurting as she did. Gwenny’s care was expensive (always get the pet insurance). There were specialists and pills, not to mention frequent imaging that required sedation. But when my little girl was hurting, Gwenny was by her side. And when Gwenny needed hip grafting surgeries, it was my daughter who convinced me we had to get Gwenny a bunny for emotional support. My daughter had Gwenny. Gwenny had the bunny, Oreo. And the three of them could often be found cuddling together in Gwenny’s bed.
Gwenny was more than just a comfort—she became a reference point for my daughter to use when talking about her condition with me. “You know why Gwenny limps?” she said to me one day. “It’s because when she walks, her knees feel like someone is running a big nail file right through the middle of them again and again.” It was the clearest explanation she’d ever been able to give me for the pain she experienced herself.
As my daughter went through flares, periods of remission, and the addition of even more daunting drugs, Gwenny faced ongoing tests, appointments, surgeries, and extended periods of pain. I had friends who asked why we didn’t just put her down, baffled at how much money was being spent, but it was never a consideration of mine. So many of Gwenny’s days were happy and playful. Putting her down would have been like telling my little girl her own life wasn’t worth living, either.
A few months ago, at an appointment for a different, mild concern, Gwenny’s vet detected a mild heart murmur. Given her frequent vet visits, we knew this had just recently developed. We discussed changing her to a more heart-healthy diet, and we set an appointment to follow up.
Days before that follow-up appointment should have occurred, we came home from running errands to find Gwenny sleeping on the couch. She didn’t jump to greet us, but that wasn’t entirely abnormal. We just assumed she was having a “pain day” and curled up next to her on the couch. It wasn’t until I asked Gwenny if she wanted to go outside to potty and her head didn’t pop up that I realized something was wrong. I put my hand to her head, and her eyes didn’t open. I dropped my ear to her chest. She wasn’t breathing.
My tears came almost instantly. My daughter took a few days for the big emotions to sink in.
While she talked one night about missing her dog and tears fell down her face, a devastating question sprung from her lips.
“Will I die too?” she asked.
For two years, I had linked Gwenny’s illness to my little girl’s. I hadn’t expected this complication.
In the weeks since Gwenny’s death, I’ve done everything in my power to help my daughter understand that Gwenny had other issues besides the rare arthritis they shared. This is made more complicated by the fact that we don’t entirely know what killed Gwenny. The vet thinks the murmur, which seemed minor, was likely a sign of something else—perhaps a connective tissue disorder that ultimately affected her heart. As I’ve repeatedly told my little girl, her heart is strong and healthy.
What I haven’t told her is that there have been kids with her condition who have died suddenly because of it. The cases are few and far between, but when you have an immune system that doesn’t understand not to attack its own tissues, things can occasionally go very bad very quickly.
I don’t know how to explain to her that we won’t always know what might go wrong in life. It’s something I’m still grappling with myself. For now, I’m simply focused on helping my daughter grieve her partner in crime.