I was listening to Iowa Public Radio when this broadcast caught my attention. It is about a boy from Waterloo, Iowa, seeking care for Batten Disease at the University of Iowa in Iowa City.
Nick’s Story
Nicholas Wellner
On February 11, 2008, at the age of six, Nicholas Wellner was diagnosed with Infantile Neuronal Ceroid Lipofuscinosis or easier said, Batten Disease. Batten Disease is an inherited, degenerative neurological disease that mostly affects young children. At this time there is no cure or treatment and the disease is always fatal.
Nicholas has always been our most energetic child! We always loved to watch him play football with his brother in our back yard. With his energy and strength we thought we had the next NFL star. Unfortunately, that has all changed.
Currently, Nicholas has lost most of his vision, he has daily behavioral challenges and has slight memory and learning difficulties. But what lies in Nick’s future is even more heart wrenching. He will eventually begin to have seizures, his memory loss will become greater and finally he will loose his mobility.
Nicholas’ life expectancy is late teens to early 20’s.
With continued awareness and fundraising efforts, we know we will find A Cure for Nick!
Click to listen to the newscast: Iowa researchers working on Batten Disease
Click to learn more about Batten Disease: Batten Disease Research Association
Tags: children's vision
That is so very sad. I hope they find a cure before it is too late for Nick! What about stem cell research? I bet that’s where the cure lies…
This is such a sad story. I was thinking the same thing Lisa, Stem Cells may be the hope for Nick. Fortunately, most of us don’t know what it is like to experience this type of tragedy. It is stories like this that truly saddens me.
Barry Wheeler
Founder, Macular Degeneration Support Canada
http://www.amdsupport.ca