A young boy and his journey with Hemophilia

02/20/2022

By Taylor King, WANE

BERNE, Ind. (WANE)- Living with a rare disease is no easy task, especially when you are seven years old. More than 300 million people worldwide are living with a rare disease. For Paul Herman and his family, Hemophilia has been a disease that they have dealt with since Paul was born.

Hemophilia is a rare genetic disorder that lacks one of the important proteins that is important for bleeding or stopping bleeding.

Paul’s mother, Jaime Herman, knew that she was going to be a carrier of Hemophilia during her pregnancy with Paul.

“During my pregnancy with him, we knew there would be a chance, especially once we found out we were having a boy that we would have a son that had hemophilia was a 50-50 chance,” said Herman. “The OBGYN that I saw got us set up with Hemophilia and Thrombosis Center in Indianapolis. They had everything ready at the hospital, we had a kit we tested cord blood right after he was born so that they could check factor level on him quickly.”

They found out within hours.

“He’s the third generation hemophiliac in our family, so we knew that there was a pretty good chance that we would be bringing home a little fellow that had hemophilia.”

As many can imagine, there have been some struggles throughout the years dealing with Paul’s rare disease.

“As far as parenting, it’s, you know, if you take – if he falls down and hits his head on something, you go to the grocery store with him and he’s got a bruise on his head, you have to get used to people looking at you, like, why does that kid have a bruise on their head?” said Herman.” Are you beating them or like, what happened was causing that. So it’s just something you have to be like, okay, you know, I’m going to take him to the grocery, and I’m just going to be kind of prepared for this,” Herman said.

But through the struggles, Paul has made some massive strides and has overcome a lot.

“He actually just did his own shot for the first time two weeks ago, which is huge. I mean, he’s seven, and not many adults can do that,” Herman said. “So it’s super impressive that he did that. That’s definitely a major triumph.”

One of Paul’s doctors, Dr. Charles Nakar, a pediatric hematologist, says when treating patients with hemophilia, he wants them to have a normal life.

“We want them to have normal development, for a child, with a bleeding disorder that may affect his growth and development, this is a very important thing,” said Nakar. “So we want him to have a normal life. We want him to know that the sky’s the limit, and he can do everything in life like everybody else, if not better. And Paul is having I think, great life,” Nakar said.

But normalcy can sometimes be hard for the Herman family. Jaime says Paul scares them frequently when he accidentally gets injured.

“The first bleed that he had really just, it kind of drives the point home that, you know, life is going to be a little bit different for us. And his first bleed was something as simple as a blood draw, it caused a bleed, and it’s nothing anybody did, it just happens. It’s severe hemophilia,” Herman said.

Despite the lack of normalcy on a daily basis, the Herman family cannot believe how strong and brave Paul truly is.

“I would say the kids with hemophilia are definitely probably some of the bravest kids that I think that you could ever see,” said Herman. “Not many kids are going to sit still for needle sticks. And you know, it’s a chronic lifelong issue. And if you don’t treat it, it leads to pain, and it leads to severe disabilities and things like that. So they really are warriors,” Herman said.

“I think that, you know, the most important thing is to hear what the families have to say, and how they’re coping,” said Nakar.

Paul loves playing baseball, watching television, and being around his family.

Source: WANE