BISMARCK, ND ( KXNET ) — Governor Doug Burgum has proclaimed Tuesday, July 30, to be “MSD World Day” in North Dakota to raise awareness of the rare disease, Multiple Sulfatase Deficiency (MSD).

Also known as Austin Disease, it affects one in four children who are born to parents who are both carriers of MSD — which is estimated to be one in half a million people in the country.

The Anseths of Mandan are one of two families in North Dakota who have been impacted by the disease, as two of their children passed away from it.

“Jill died from MSD when she was 14 years old,” recalled Linda Anseth, “and she was our oldest child. Our son, Max Thomas, also died from the same disease.”

Children born with the disorder will experience slower development, including delayed speech and difficulty walking.

Unfortunately, as the incurable disease progresses, it causes neurological damage and is eventually fatal.

“This deteriorates the brain,” Linda continued, “in which they lose their eyesight and their muscle mass. They lose everything. They don’t get very big. The kids were little and they weren’t able to walk. They were both in wheelchairs but were happy. They loved music, and they loved people. They also loved to get kisses and be rocked.”

The Anseths say that when their two children were first diagnosed, even their doctors did not have a lot of knowledge about the disease until further research was done.

Now, they hope that the Governor’s proclamation will help raise more awareness among North Dakotans about the disorder and that funding will become available to one day find a cure.

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