Video: Ben's Hyperinsulinism Story

Video: Ben's Hyperinsulinism Story

Julie Raskin, Ben's Mom: Ben was born and we were thrilled and excited. So Ben was nursing, and he was very upset and hungry and he wouldn't stop nursing and didn't take breaks. And all the other babies would nurse and then they'd sleep, and they'd nurse, and they'd sleep. And I was concerned. Suddenly, Ben was very lethargic, and he went from being very hungry to not being hungry at all and not nursing at all and was just sleeping.

So, this shift and this difference was very strange and I was concerned. So, we went to our local hospital, and Ben had very low blood sugar upon arrival. A normal blood sugar is somewhere between 70 and 110, and when Ben was first brought to the emergency room, Ben's blood sugar didn't register. Hyperinsulinism is the overproduction of insulin, which causes severe low blood sugar, and the body needs sugar to grow and develop. And when a baby is born with hyperinsulinism, and there is the possibility, or in many cases, prolonged hypoglycemia that can cause brain damage or even death.

And so, it's so important to intervene early, to diagnose early, and to treat early. Ben was not diagnosed at birth, and as a result of not being diagnosed at birth, Ben's body was deprived of the glucose that it needed for Ben's brain to grow and develop. And as a result of that, Ben's vision was affected. And so while Ben wears glasses, he's still is very challenged in terms of what he's able to see. And he does incredibly well with the vision that he has, but it's limiting. He also has issues with fine motor coordination and has some learning disabilities.

Ben: Rather than … thinking of it as like some sort of barrier or anything like that, I think, I just think of it as a part of me.

Julie: So, we learned that CHOP was the place to go for the condition. When we came to CHOP, we were embraced. We actually, when we first arrived, we, we were so surprised that hyperinsulinism was so well understood, and it was as if we weren't rare. We weren't unusual and what Ben had was common. We felt that so strongly when we got here, that rare was common, and that wasn't just reassuring in, in an emotional way but from a care perspective.

Ben: Everyone here that we've worked with is really nice and we enjoy seeing them and like talking with them, and they've provided us with great care.

Julie: It's so important to get to a center of excellence where the disease is understood, where the care is fantastic. And then, there is this possibility to go on and have, you know, a very healthy, very, very good life. We've been coming CHOP for 22 years and it's really a long time, and we have such a bond with this hospital. There are so many amazing people; they've taken such incredible care of our son, and we owe them the world. Our son has such an incredible life because of the incredible care he's gotten here.

Ben: Right now, I'm a college student at Bryn Mawr College, a school designed for people who learn differently. It's a great place to challenge yourself and open yourself up to something that you don't think you would usually do.

Julie: We owe CHOP the world, so you are not alone. There's a community of people living with hyperinsulinism. There are thousands of people around the world with hyperinsulinism, and together as a community we can move mountains. We can find better treatments; we can care for each other.

Ben: It's a day-by-day thing, you know, like. It will get better and good things will happen to you. Good things are always happening.