Max’s CVID Journey: From Constant Illness to Strength and Hope

I used to joke that Max was the kid who was born with a sinus infection.

At just two weeks old, I was already sending videos of his breathing and congestion to the doctor. By six weeks, another pediatrician ridiculed me for bringing him in with a stuffy nose. By age two, I was carrying my shaking toddler into the ER with a 105-degree fever only to be shamed again for how many antibiotics he’d already been on. They did a chest X-ray… and prescribed yet another antibiotic.

Somewhere along the way, we fell through the cracks.

The sick visits piled up. We saw provider after provider. But no one asked deeper questions. No one seemed concerned. I was left to navigate those confusing, heavy waters alone and without a roadmap. It got to the point where it would take three different antibiotics just to treat one ear infection. He had multiple sets of ear tubes, his tonsils and adenoids removed, and eventually developed C. diff from all the antibiotics. Then came the eczema.

I scheduled allergy testing, not realizing that allergists are also immunologists and not knowing that appointment would change everything. For the first time, someone had thoroughly reviewed Max’s chart. Someone asked the right questions, connected the dots, and said out loud what I’d always felt in my gut: something wasn’t right.

That allergy test led to extensive bloodwork, a consult with a mentor at Children’s Hospital, and the discovery that Max’s immune system wasn’t functioning the way it should. He wasn’t producing antibodies to certain vaccines.

At age three, Max began immunoglobulin replacement therapy. Because of his age, they didn’t want to give him a formal diagnosis just yet. We were told there was a 50/50 chance he could outgrow it, but until then, his body needed help. Since antibody production can’t be stimulated, they’re replaced. (And if you’re someone who donates plasma thank you. That’s what makes this life-saving treatment possible.)

We were given two options: monthly infusions at the clinic or weekly ones at home. We chose at-home treatments to make him as comfortable as possible. That’s also when Major came into our lives. After everything the kids had been through, we decided they needed a happy distraction and Major delivered. That dog became Max’s constant companion. He never left his side on treatment days. He curled up beside him when he was sick. He even climbed into the bathtub with him. Major was Max’s light on a dark and scary journey.

Eventually, the treatments became routine: first weekly, then biweekly. I think it hurt me more than it hurt him. There’s nothing normal about sticking a needle into your child’s arm, watching him cry, then watching his little body battle the side effects: the fevers, the body aches, the fatigue. And then the pandemic hit, bringing a whole new layer of fear for a child whose immune system didn’t fully function. But we got through it. The treatments stopped. Life got busy. So busy, we never went back for bloodwork. We wanted him to have a chance to just be a kid. And for two years, he did. He was healthy. Happy. Thriving. I thought maybe, just maybe, we were in the clear.

Then he started school this fall.

This school year has been an absolute shitshow of illness for all the kids. I don’t think we’ve had a single week where someone wasn’t home sick. The exhaustion? It’s hard to even put into words. There were so many doctor’s appointments, battles over antibiotics, homework catch-up sessions. And then, out of nowhere, we had to say goodbye to Major. Losing him broke all of our hearts, but especially Max’s. He lost his best friend that day.

Over the next few months, I started to notice changes in Max’s behavior. He was irritable. Emotional. Constantly on edge. Between the move, the sickness, and the loss, I chalked it up to life being heavy, but my mom gut knew otherwise.

It was that change in his behavior that pushed me to call the immunologist again. I asked if we could repeat his labs. The doctor said it was unlikely anything serious was going on after all, he’d been recovering from illnesses and responding to antibiotics. But I couldn’t shake the feeling that the “old Max” was back, and I knew from experience: that Max wasn’t easy to live with.

So we ran the test.

Most of the time, being right feels validating. But not this time.

Max was officially diagnosed with Common Variable Immunodeficiency (CVID) a primary immunodeficiency that means his body doesn’t make enough antibodies. It’s the most common PI, yet often goes undiagnosed until adulthood. It’s a chronic condition that requires lifelong treatment. But with proper care, Max can go on to live a full and “normal” life.

We’ve restarted biweekly infusions at home. A wonderful nurse came out to walk us through the first one, and tonight, I did the second by myself. He was nervous because apparently, not having an MD means I “don’t know what I’m doing”, but we got it done with zero tears! I’m praying the side effects are gentler than last round. It was rough. And I know the empty space on the couch where Major used to sit is still very much felt.

Out of respect for Max, I won’t share every detail. But watching your child struggle is a heartbreak I wouldn’t wish on anyone. I would give anything to take the fear and pain from him. And even though these last few months have been incredibly difficult, I want to say this: Max is the strongest, bravest 10-year-old I know and I’m proud to be his mom.

He missed a month of school last quarter and still kept up with his most of his homework. His grades weren’t what we know he’s capable of, but he should be proud of what he managed. He also completed his first travel hockey season with 60 goals. I can’t wait to see what he can do when he’s healthy and feeling strong.

This isn’t the life I would have chosen for him, but since it’s the one we were given, I’ll be here every step of the way. However he chooses to face this, I’ll face it with him. He has a mom who’s moved more mountains than she ever imagined. Who knows what hard feels like, who sees his struggles even when no one else does, and who will stand by his side through it all, no matter what.

We’re stronger together. We’ll keep pushing through the hard days and soaking up the good ones.

As for the treatment itself:

We insert four small subcutaneous needles, two in the backs of each arm. The medication is infused slowly through a pump over the course of an hour. He’s able to move around during the process and tonight we made a tie blanket. The side effects usually appear a few hours later and tend to peak after a few days.

It’s been recommended that everyone in our house get tested. The girls had their labs done, and both were on the low end of normal. Kinley’s IgA level was below normal. We’re meeting with a new immunologist in the coming weeks and I will ask more questions then. We just found out that Maddy will be spending fours days at Mayo Clinic in June (more on her later. It’s been a ride y’all) so if they feel that she needs more testing it can be done there.

Max gave me permission to share this story after a lot of conversation and thought. He doesn’t want his classmates or teammates to know right now, and I respect that. But he said I could share a little, if it might help someone else. And maybe inspire the person next to us.

We’re learning. We’re adjusting. And we’re so grateful for the prayers, love, and support we’ve received. Most of all, we’re so hopeful and excited for Max to finally feel better. For the good days ahead, the strength he’ll keep building, and everything the future holds for this incredible kid.

We’ll keep moving those mountains—together. ❤️