Dealing with a devastating disease - WKOW 27: Madison, WI Breaking News, Weather and Sports

Dealing with a devastating disease


Life always seems to throw unexpected surprises at you - those happy moments, like when a child is born.

But you really put life into perspective when a family member is diagnosed with a devastating disease.

Diana Henry introduces us to Dawn and Doug Van Essen.

Dawn Van Essen leans on her husband Doug for support, like she has for the past 33 years of marriage and through the years of raising 6 children. 

But this time it's a little different. 

The strength in her legs and arms is not what it used to be.

In fact, she's fallen recently - quite a few times.

"It never entered our minds, at least not mine, that it would turn up something like this," Doug Van Essen says.

The "this" is Amyotrophic Lateral Sclerosis, or ALS.

Doctors diagnosed Dawn with a very aggressive form in February.

The disease has made it difficult for her to talk and left her very weak.

"You never think it will happen to you," Dawn says.

ALS is an incurable disease - there's nothing that really stops it or slows it down.

Dawn often turns to a book she was given to explain what it feels like to have ALS.

Dawn turns to her faith, family and friends and also to the Muscular Dystrophy Association for support.

"I didn't know a lot about it before I think we have to let more people know about the whole spectrum of diseases that fall under MDA," Dawn says. "It hurts (pause and cries) I want other people going through this to have the help we are being given."

Dawn and Doug take advantage of each day they have together and maximize time with their 6 grandsons.

And when I asked Doug what he hopes for Dawn in her final days, he said "that whatever the disease brings, she finds joy in life. Value, purpose.  Even when the disease may have taken away most of her what we say her abilities, whether it's walking or speaking. And that her grandkids can learn the value of life even if its different than what we sometimes say is normal."

And Dawn's message for Doug...

"He continues to enjoy life and our family.  That he will have peace.  That he can go on.  That life for him will get back to some sort of  normal.  Doug, I think this is normal for us right now."

30,000 people in this country have ALS.  

It's most commonly diagnosed in more men than women.

The Van Essens would like more people to contribute to MDA to help continue funding for research, so that one day there may be a cure.



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