“MPS II, also known as Hunter Syndrome, has been a part of my life for as long as I can remember. I grew up watching my little brothers battle this devastating disease, witnessing their joy turn into struggle as they slowly lost the abilities most of us take for granted. First, their words faded. Then, the ability to eat, to walk, to breathe. I held their hands as they slipped away—Nathaniel at just 11 years old, and three years later, Nyaire at 14. Their lives were stolen by this cruel disease, and the grief of losing them still weighs heavy on my heart.
But my story didn’t end there.
Years later, I became a mother. My son PJ was born on April 1, 2017. A vibrant, curious, brilliant baby who hit every milestone—some even ahead of schedule. I called him my genius baby. But shortly after his first birthday, things changed. Frequent ear infections, severe sleep apnea, hospitalizations for breathing issues. Doctors reassured me, offering tips to fight daycare germs. Then, I became pregnant with Pharaoh. Almost immediately, he too struggled to breathe.
One month before PJ’s second birthday, our world shattered. My thriving, energetic little boy suddenly lost all his skills. Walking exhausted him. He stopped sleeping. And when I looked at his face, I saw something eerily familiar—his features were changing, just like my brothers’. My heart pounded as I picked up the phone to call a geneticist.
The moment the doctor and genetic counselor walked into the room, I knew.
“I’m almost certain he has Hunter Syndrome,” they said, confirming my worst fear. “We need to test Pharaoh too.”
And just like that, my sons’ futures—their hopes, their dreams—were stolen before my eyes.
Grief introduced itself to me again. But this time, it was different. I was grieving my beautiful boys while they were still alive, knowing MPS II would take everything from them.
Shortly after, PJ was hospitalized with rhinovirus and placed on oxygen. What was supposed to be a short stay turned into two months; during that time, our incredible genetic counselor set us up with every specialist imaginable. I juggled appointments for Pharaoh, then rushed back to PJ’s hospital room, repeating this cycle day after day. Cincinnati Children’s Hospital became our home.
Then, a glimmer of hope.
Our genetic counselor found a clinical trial at UPMC Children’s Hospital of Pittsburgh. It wasn’t a cure, but it was a chance—something my brothers never had. For months, we traveled between Cincinnati and Pittsburgh, just me and my boys. Eventually, both PJ and Pharaoh were accepted into a clinical trial. I packed up our lives and moved to Pittsburgh, determined to give them a fighting chance.
In August 2022, life threw me another curveball—I was pregnant again. My third son was born in May 2023 and was tested for Hunter Syndrome at birth. The result? Positive. My heart shattered once more. But this time, we had a plan. Unlike his brothers, he started treatment at just three months old.
All three of my sons are part of a clinical trial, and while they are doing well, this is not a cure. The treatment is not FDA-approved, meaning many families don’t even have access to this small chance at hope. The trial may slow some of the disease’s effects, but it cannot undo the damage already done. My oldest boys, now seven and six, are nonverbal, not potty trained, and struggle with behaviors rooted in frustration and pain they cannot communicate.
We need a cure.
I planned two funerals for [my brothers], and the thought of losing my sons the same way breaks me. No parent should have to live in constant fear of a ticking clock, watching time slip away, knowing they are powerless to stop it.
We need newborn screening. We need FDA approval for existing treatments so more families can access them. We need funding for research. We need hope.
MPS is stealing our children. Their futures should not be just a dream. It should be a reality!”
