MEET DOMINIC

I am 16 years old and live in Prosper, Texas.  Like most teens, I enjoy playing on my iPad and playing video games. I also love listening to music and dancing. In 2011, I was diagnosed with a rare genetic progressive disorder called Hunter syndrome or Mucopolysaccharidosis Type II (MPS II). This is a rare condition affecting 1 in 150,000 males and there are only about 2,500 patients world-wide. THERE IS CURRENTLY NO CURE.

Having Hunter syndrome means that I am missing a single enzyme which is responsible for breaking down and recycling long sugar chains called GAGs within every single cell from head to toe in my body. Without this enzyme, GAGs are building up in cells throughout my body, causing progressive damage. Hunter syndrome can cause significant delays in all areas of development. For example, one day I might no longer speak, sing, eat, play with toys, or dance, and that I might need total assistance to care for myself. My joints are already stiff and could become stiffer, making it hard for me to move. I have frequent upper respiratory and ear infections, so one day I might need machines and oxygen to help me breathe. I have hearing loss and one day I might not be able to hear the music that I love so much. My liver and spleen are enlarged, and my heart has a leaky valve. These are just a few examples of how Hunter syndrome affects me.

Although there is no cure, there is an approved treatment that consists of a weekly 4 hour IV infusion of a medication called Elaprase, which is essentially a man-made version of the enzyme that I’m missing. I need a WEEKLY 4-HOUR INFUSIONS FOR THE REST OF MY LIFE. One day per week, instead of playing with my friends or going to school, I am connected to an IV for about 4 hours. It’s a long time to remain relatively still so I watch TV, play on my iPad and eat snacks. The cost per year for each person receiving the Elaprase IV treatment alone is about $500,000. Yes, this is not a typo – the cost is about half a million dollars per year only for the medication!! This does not include any other medical visits and I see about 10 doctors annually. The Elaprase IV treatment helped but the medicine does not cross into the brain so my cognitive skills are still affected.

In 2014, I was accepted into a clinical trial where clinicians are delivering an investigational version of Elaprase medication to the brain. I was randomized into a control group. I was able to get the first dose of medicine to my brain in November 2015. I am very blessed to have been able to get this treatment; however, brain damage is not reversible and my cognitive age is around 3-5 years old. As part of the investigational treatment, I traveled out of state, hundreds of miles every month. My mom and I tried to make our “home-tel” visits somewhat fun, and I enjoy traveling and meeting other boys like me. The treatment helped slow down the progression of the disease and maintain some skills. I also dislike the doctor’s visits and over the years have developed a lot of medical trauma.

On March 25, 2026, a new medication called Avlayah was approved in the US. Medical experts say that this medication can slow down the progression of the brain disease. This new medication is also a version of the man-made enzyme that my body is missing administered via a weekly 4-hour IV infusion AND this medicine crosses into the brain!!! This is the first medicine for Hunter syndrome that will treat the progression of the brain disease. I got my first dose of Avlayah on May 15, 2026.

Despite much progress, HUNTER SYNDROME REMAINS A TERMINAL ILLNESS. Everyday my family prays that a cure will be found and that every person affected by Hunter syndrome will have access to curative medicine. My goal is to raise awareness about Hunter syndrome and other MPS diseases, and fund medical research so that kids like me can grow up. For my 4th birthday, my mother gave me a special and unique gift. She founded the Hunter Syndrome Foundation, a 501(c)3 non-profit corporation with a mission to fund potential therapies that will ultimately find a cure for this disorder. In 2022, my mom also joined the Board of Directors for Project Alive, a Hunter syndrome advocacy organization. 

Please consider donating to either organization. Your support will help RAISE AWARENESS AND FIND TREATMENTS FOR HUNTER SYNDROME.

Thank you for reading my story!