Grayson’s Journey

Grayson Hunt Schminke was born February 20, 2016. He knew he had a lot to do in a short time frame, so he decided to come three weeks early. He was a healthy, beautiful boy. Grayson thrived and cognitively continued to meet and exceed all cognitive milestones beyond his years. Grayson had it all, at just 16 months old he was line driving a wiffle ball off of a tee. Slam dunking a basketball into the hoop. Shouting, “I made it!!!” or “I missed it!”. Playing with his cowboys and bucking them off as he gave them a wild ride on one of his horses or bulls. At just 2 1⁄2 years old he knew what he wanted and had a vivid imagination on how to play rodeo. We got to make a lot of memories, record a lot of videos, and voice banked his precious voice before he lost it.

Grayson was around 18-20 months old when we started to notice some balance issues and walking on tiptoes on his right foot. From there, he went cross eyed in three days and our journey battling this disease began.

The weekend after Halloween 2017, Grayson’s eyes went from crossed on Friday night, to sometimes crossing, to Sunday night completely crossed all the time. We were admitted to The University of Iowa Stead Family Children’s Hospital in November of 2017, under the impressions he had a very aggressive brain tumor. The next day, Grayson was in for an MRI of the brain. To the doctor’s surprise, the MRI came back clean and showed no signs of anything. They rushed us to Opthamology to help with the crossing of the eyes who did their own exams. The exams concluded that he would need glasses with prisms in them to help strengthen his eyes. The next few days they ran a multitude of tests, all coming back clean with little answers.

Two weeks later, right before Thanksgiving, we went back in to do another MRI of his spine. Looking for a tethered cord or a tumor pressing somewhere. Again, the tests came back clean. Another two weeks passed and we were back to Neurology for a follow up. This appointment seemed like it took forever, and still no answers. All the while, Grayson’s heel cords had gotten tighter while doing physical therapy. They should be getting looser, as the goal of therapy was to help the tightness, but they were only getting tighter and tighter. We left that appointment with no answers, but could tell that Neuro and PT were perplexed by Grayson’s symptoms.

The next morning, we received a phone call from Neuro asking us to come back as they wanted to get fresh labs and do a broad screening of genetics. We thought, ok, no biggie, he’s an IVF baby and we had done genetic testing already and knew there was nothing genetic in either of our families.

Another two weeks passed and we received a phone call from Neuro about the test results. They didn’t have anything concrete she said, but would like us to come back in and have Grayson give more samples so that they could make sure everything was collected, stored and shipped correctly because something did show up. At that moment I knew it couldn’t be good. I convinced her to tell me what we could be up against and she did.

I was at work when I received the phone call and I remember being in a daze as I was getting ready to leave. I don’t even remember the drive to daycare to pick up Grayson. The next two weeks were horrendous. Waiting for the results and trying to think of every symptom or sign that could possibly give us hope that it was not MLD. I mean, there is nothing genetic in our families. How is this possible? It can’t be.

By January 2018, Grayson was officially diagnosed with late-infantile metachromatic leukodystrophy (MLD for short). MLD is a rare, genetic, degenerative, neurometabolic disorder that affects between one in 40,000 to one in 100,000 births (primarily children) worldwide. MLD is an auto recessive disease, but parents are typically not affected. At present, it is a disease for which there is no cure. There are several forms of the disease with Grayson’s being the most common and affects children under 4 years of age. Motor milestones and some cognitive functions are lost as the disease progresses rapidly and death typically occurs within 5-6 years. All we could do is manage his symptoms and help him be as comfortable, and pain free as possible.

MLD caused Grayson to lose every milestone - the ability to walk, talk, and eat. He would be paralyzed and in the final stages of the disease, by the age of 5, he would become blind, experience dementia and become non-responsive.

Grayson had it all, Dion and I watched Grayson lose everything bit by bit.Watching your child lose function after function was like a big tidal wave knocking you down every time you got back up. Throwing you into grief over and over again. Every loss was another thing to grieve. We had to grieve the loss of all the what were’s, the what were supposed to have beens, and all the things we knew we would never get to see Grayson do.

Grayson passed away in January 2022 after losing his battle to MLD. He fought so strong and gracefully. He endured more in his short lifetime than most of us could even try to imagine.

He is the reason we see a huge need for help with getting medical equipment for kids. He grew fast and we always had to order a size or two too big because insurance wouldn’t cover a new one. So we got bigger sizes and used pillows to stuff around him to support him & make the equipment last longer.

Grayson Hunt Schminke was and is our whole world. He deserves nothing but the best and always will. I will forever do things to help make the world aware of this tortuous disease.