Sutton's story is shared by his mom Brook Kroeze.
We did not start noticing symptoms in Sutton until around 4 months of age. He was hospitalized a couple times before diagnosis, his first being for pneumonia and the second for failure to thrive/seizure like activity. The first symptoms we recognized were lack of head control, seizure-like activity, low tone, and taking a long time to finish a bottle by mouth.
When we were hospitalized the second time, his EEG was normal, but they decided to do a brain MRI just to be safe. The MRI showed suspicious findings for a disorder such as leukodystrophy or a metabolic/mitochondrial disorder. The parts of his brain that showed loss of white matter were his basal ganglia and brain stem. This was devastating for my husband and I. I still feel as if that day was just a nightmare we couldn’t wake up from. We opted for a g-tube to be placed and they sent us home after he was stable. They also started genetic testing during this time, which took weeks to come back.
A couple weeks later, he developed intermittent subtle eye rolling. I was concerned about this, so we did bring him to the University of Iowa, and they diagnosed him with infantile spasms, a type of seizure disorder that was a complication from his underlying disease.
We started steroids for treatment, and a couple weeks after we started those, Sutton went into respiratory failure. Thankfully, we suspected something was wrong before it was too late and had him at the hospital when this happened. They did another brain MRI, which showed diffusion restrictions in many spots (metabolic strokes) including his brainstem. We started supportive treatment for what they suspected was Leigh Syndrome. We were in and out of the hospital for a couple of months, many admissions required intubation. Sutton ended up passing from respiratory failure in the hospital setting at 7 months old on March 27th, 2025. Every genetic test on him and myself and my husband had come back negative, although his entire clinical picture shows Leigh-like Syndrome.
Sutton loved being held and cuddling his loved ones, especially his mommy and daddy. He loved being outside, going on walks and enjoying the fresh air. He was such a silly, beautiful boy. His time here was extremely short, but he made the biggest impact on many, including my husband and I. We’ve learned to never take anything for granted, because you never know what can happen. What happened to us and Suttonwas something that we never thought would be possible. It was completely devastating. It’s devastating that we still do not have any answers as to why this happened to our perfect son.
My advice to newly diagnosed family is to ALWAYS trust your gut. We had many instances where we would have to fight for admissions with Sutton where he would always end up intubated in the end. You know your child best. Also, do not take anything moments for granted. It’s hard to be grateful for moments with anticipatory grief, but try to see the good.
Talking about Sutton and doing things for him help me cope. For Mother’s Day, we had a picnic with him (his urn) outside. It helped me feel close to him. I spend time in his room reading a lot. I also like to buy flowers for him on the 14th of every months (August 14th is his birthday). I always talk about him. I never want his memory to fade. He will always be my first son and my first child.
