Saving Josh

It is so difficult to condense what Josh has been through into just a few paragraphs. He has always been my hero. He has always had to fight to do the things most of us take for granted. And yet, he has also been invisible or mistreated by others—including family—because of his disabilities.

Josh carries the labels of “severely disabled,” 1p36 Deletion Syndrome, Cerebral Palsy, Autism, and more. But those labels don’t tell the full story. Yes, they have made life harder for him, but they don’t define him. Josh is the best person I know. He is loving, kind, sweet, gentle, funny, quirky, sarcastic, and beautiful. He doesn’t hold grudges, he forgives easily, and he doesn’t hate. How many people can truly say that?

Josh is now being overmedicated. When this began, he was placed on a medication that contained an ingredient he is deathly allergic to. The pharmacy should have alerted the prescribing doctor, but the medication was still given. Within about three months, I began noticing side effects—Josh couldn’t swallow properly, and he couldn’t use the bathroom without intervention. The drug also interacted with one of his other seizure medications, causing dangerously high ammonia levels. Prolonged, this can cause brain damage—and it did.

I researched and even found medical articles showing that his lab results could be explained by the interaction of those two medications, but I was dismissed. It took me several months to realize the medication also contained the allergen. When I confronted the doctor, I was told that seizure control was “more important than brain damage.” I heard versions of this statement from multiple doctors, all implying the same thing: because Josh was already disabled, further harm didn’t matter. They didn’t see him—they only saw his disabilities.

Thankfully, I was not alone. Twice, I had friends in the room when doctors made comments like this. They heard it too. For once, I felt validated. I wasn’t “crazy”—doctors were denying my son proper care because he has severe IDD (Intellectual and Developmental Disabilities).

People often ask me why I don’t just take him off the medications. The truth is, Josh has the type of seizures that can kill him. If I stop his medication without an alternative, I leave him vulnerable—and I cannot do that. But I also cannot sit by while a medical system that refuses to value his life, drugs him into chronic pain and cognitive decline. Just a couple of months ago, when his medication was temporarily lowered, I saw Josh almost back to his baseline. I know he is still there. We need to fight fast—before these drugs cause permanent brain damage and take him from us completely.

This is why I need help. Josh needs an epileptologist—just one doctor who sees his worth and is willing to fight for him. I know insurance can make things complicated, but this is a human life we’re talking about. Josh is in pain. He is disappearing. And he doesn’t deserve this. He is not “less than.” He deserves the quality of his life back. The value of his life cannot and will not be defined by the ignorance of others.

How you can help:

Share Josh’s story. If you know a neurologist, share this with them. Point them to this website. Post his videos and share the link to this site across social media. Comment and share on our platforms. These are simple and easy actions, but could change Josh’s entire world. Let’s take Josh’s story viral so people know what is happening—not only to him, but to so many adults with severe to profound disabilities who are denied proper care every day. Awareness matters, and your voice can help.