06/03/2026
Over the last month, Nathaniel has experienced two major injuries, a fractured cheekbone and a cut above his eyebrow from a fall that required stitches.
These injuries have forced us to have difficult conversations about his declining ability to walk independently and, most importantly, safely. We have spent countless hours researching adaptive equipment, advocating for accommodations, and fighting to ensure Nathaniel has access to a safe learning environment.
At the same time, I have found myself explaining PKAN over and over again to strangers who question every decision we make for our child. I have had professionals tell me he doesn't need support, that he is "fine," despite clear evidence to the contrary.
It should not be this difficult to secure appropriate care and support for a child living with a progressive, terminal disease. Parents of children with medical disabilities should not have to spend hours gathering documentation, only to have it ignored and dismissed.
I am exhausted from constantly having to prove what Nathaniel needs. I am tired of being dismissed and disrespected. Most of all, I am tired of seeing Nathaniel treated like just another number or another patient instead of the child he is. A child who deserves safety, dignity, support, and the opportunity to thrive no matter his life expectancy.
We will keep advocating for him, but families like ours should not have to fight this hard just to be heard.
Enjoy a sweet Nate later in the day after getting stitches. His pain tolerance is off the charts.
