Gonvick Man Living With Muscular Dystrophy Shares His Experience

It’s a genetic disorder that causes muscle weakness and usually affects boys – and it’s something that Jacob Gunvalson is living with. Duchenne Muscular Dystrophy, or DMD, is one of the most common types of muscular dystrophy.

“I try not to think about it as much as possible, because I’m not going to let a disease dictate my happiness,” said Jacob.

It was at a young age that Jacob’s mother, Cheri, started noticing things with his development. She used her nursing background and paid close attention to the signs.

“He had really good fine motor, but his gross motor was lagging,” said Cheri. “He fell very easily.”

Now, Jacob thrives and is a productive member of society. He graduated from the University of North Dakota and is a social worker. Although Jacob is wheelchair bound, he doesn’t take for granted performing tasks such as using his cell phone, something his peers with DMD can’t do.

“I’m not tied to a ventilator, stuck in a bed all day, which unfortunately, I know of some people that are younger than me that have that situation.”

The typical life expectancy for someone with DMD is the mid-20s, and Jacob will be 26 in a few weeks. The Gunvalsons say the drug Translarna, or ataluren, has made the difference.

“When there’s no other drug available, it’s a fatal disease,” said Cheri.

Every 90 days for the past eight years Jacob has gone to the University of Minnesota for treatment. He’s currently enrolled in a clinical trial for ataluren, which he takes three times a day.

“Independence is my life; without independence, I’m not living my life,” said Jacob.

Ataluren is available in several countries, but not in the U.S. Next week, the Gunvalsons will travel to Washington D.C. to attend a public forum with the Food & Drug Administration. They will share how the drug has impacted their family.

Quoting from a written statement, Cheri read, “I urge the panel to give weight to the benefits of the the drug and look at Jacob’s extraordinary experience on the drug with no risk to his health.”

“I don’t like to deal with the possibility of death, but if the drug is taken away again, I can see that trajectory really speeding up,” said Jacob.

The FDA will make a decision on ataluren on Oct. 24.