Living with hemophilia

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BURLINGTON, Vt. (WCAX) March is Bleeding Disorder Awareness Month. About 400 babies are born with hemophilia every year, according to the CDC. It is when a person's blood isn't able to clot.

Oftentimes, expensive medical procedures are used to help the blood clot. One of those procedures is implanting a Mediport. About 30 percent of people with hemophilia type A develop something called an inhibitor, which means the body rejects the clotting factor patients need to stay healthy.

One Vermont family has a son with this disorder and they want people to know he's a normal 4-year-old. The Johanssen's start their day by giving Mason his medication. As with any young child, sometimes it also takes some negotiation.

"I'll give you a saline so you can squirt dad," Michelle said. "It's ridiculous how much bribery I have to do."

But it has to be given in order to keep Mason alive. Setting up the medication takes about 15 minutes and that is only part one, which starts with sterilization.

"I'm preparing the meds, mixing up the two vials of medication. Then actually doing the sterile procedure to get the medication into Mason via his Mediport," Michelle explained.

Part two is injecting the medication, which can be a real challenge with a 4-year-old. It was at 6 months that doctors diagnosed Mason with the disorder.

"Initially when Mason was first diagnosed, we had never heard of hemophilia," Michelle said.

Before the family could do research, tears and fears consumed them.

"My parent bubble was shattered with the hemophilia diagnosis. There are things that I did not expect to be doing as a parent," Mark said.

Mason's parents say besides bribes, cartoons work as a distraction. After welcoming their second son, who also has hemophilia, the Vermont couple found their initial woes are gone.

"I'm optimistic. You know, like living where we do. We have great access to medication and the treatment options that are coming in the near future are really positive," Mark said.

"I want him to be a normal little boy and I want him to know that he is a normal little kid. This is just one piece of him," Michelle said.

Thursday, Mason got to teach his class all about hemophilia. Most of them wearing red ties to bring awareness to his condition. His parents, Michelle and Mark, have become advocates for the disorder, pushing research and awareness. The governor acknowledged March as Bleeding Disorder Awareness Month, something Gov. Phil Scott put into place last year.