Oliver Hise

We are the Hise family, and our son, Oliver, was diagnosed with Multiple Sulfatase Deficiency (MSD) in 2020. Before Oliver was born, we spent five years trying to conceive and ultimately got pregnant with our oldest daughter. Shortly after she was born, we were pregnant again, this time with Oliver. From the get-go, everything was just different with him. Compared to his older sister, he was lazy in the womb, and I didn’t feel him move around a ton in my belly. I had a C-section and can remember him not crying after he was born. Before we were able to leave the hospital, he passed his newborn hearing test, but he struggled to take a bottle or even wake up crying for one.  

As he grew older, he hit all his developmental milestones (crawling, walking, talking, etc.), just months later than expected. As a baby, he had no desire to lift his head, and thus began to get a flat spot on the back of his head. At 9 months, we started early childhood intervention (ECI) and therapy for Oliver. He started with physical therapy, and then we added speech therapy too. He eventually began saying word approximations, but very minimally. When he aged out of ECI, we drove over an hour from the house three times a week for 6 years to help get Oliver the services that he needed.

Throughout his early years, we saw so many specialists because we knew that something was off, but nobody could figure out what was causing Oliver’s developmental delays. Seeing these specialists was difficult because we live about an hour away from the closest city, three hours from better doctors, and about six hours from the specialists. Finally, at three years old, Oliver was referred to a developmental pediatrician, and he was diagnosed with autism. We did all the research we could about autism and got Oliver the best services, but he never seemed to make progress, and even started to regress.

In 2020, during the height of the pandemic, Oliver’s neurologist decided that she was not satisfied with his autism diagnosis and suggested he do genetic testing again. Oliver was almost ten years old when we received his diagnosis of Multiple Sulfatase Deficiency. The doctor who gave us his diagnosis shared that he barely even heard about MSD in medical school, had never diagnosed it, and was not quite sure where to send us next. I immediately started researching MSD support groups and found this wonderful community of people who shared their stories and told me what’s going on with their kids. It was a blessing to find them. We are freer knowing his diagnosis instead of continuing to question why…now we know, but it’s a catch-22 because there is a lot more research about autism than MSD.

Oliver is now twelve years old and likes to say “I ove ooo” (I love you) to all of us. It’s something that we hold on to, since he can’t say anything else anymore. Oliver is so special. Not just to us; he is just a special kid. Our MSD kids are so special, and to be part of the ultra-rare community is crazy and insane. There is so much more we don’t know—not just about MSD but all kinds of genetic things. It’s a scary, amazing future for genetics and, in general. Hearing what other families are going through, it is nice to know that it isn’t just us; we aren’t alone in this diagnosis. We are forever thankful for those who paved this hard road before us. It means the world knowing that there is hope for a cure and for the future. Without the foundation, there would be no hope.

Written By Kelci Hill (Student Ambassador)