Newly FDA-approved drug helps South Bend 4-year-old with hemophilia A

09/25/2019

By Lauren Moss, WNDU

SOUTH BEND, Ind. (WNDU) - For most toddlers, falls and bumps are part of the growing process, but it was much more serious for Logan Diaz, of South Bend.

The energetic 4-year-old was born with hemophilia A, a serious bleeding disorder. For the first few years of his life, his parents have been on edge, watching his every move.

Now, there's piece of mind, thanks to a new treatment.

"We used to go to the ER a lot. A lot," said Jennifer Diaz, Logan's mother.

Because of the boy's bleeding disorder, it didn't take much to cause a major episode involving his muscles and joints.

"He started to develop a bruise up his spine from being born, like the length of his back," Jennifer Diaz said. "The day we were supposed to be sent home, the nurse told us something wasn't right."

Growing up, bruises have been a big part of Logan's life. For treatment, Logan was living with a port under his skin, getting medical injections multiple times a week.

"The day he got the injection, everything was great and normal," said Juan Diaz, Logan's father. "We can play the way we do and not worry too much. But then on the last day when his levels were getting low, we would have to have a quiet day and not do too much. We've got to make sure he doesn't fall or bump into anything or play too hard."

But now, there's peace of mind.

A new drug called HEMLIBRA, which was recently approved by the Food and Drug Administration, has turned Logan's life around. It's self-administered weekly by an injection under the skin.

"It really keeps him at a steady state, provides better protection," said Dr. Amy Shapiro of the Indiana Hemophilia and Thrombosis Center. "You don't have to hit a vein, and patients who have been treated with this at our center are reporting great outcomes and less breakthrough bleeding."

"The whole idea of him being able to be a more normal kid and not to have to do that every three days [is huge]," Jennifer Diaz said. "It's every couple of weeks and it's quick, it's not a big deal. ... All of the things he's been through in his little life, he is a warrior."

The new medications is giving Logan a little more freedom to play however he wants.

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