|About David’s Refuge
David’s Refuge was started in memory of David Pfohl. He was a typical, healthy, happy little guy who lived life to the fullest.
In late February 1997, two months after his family returned from living overseas in Poland, David began to have difficulty seeing. Within a matter of weeks he lost all of his central vision and some of his peripheral. The initial diagnosis was Macular Dystrophy, a non-specific name to describe his condition.
In an attempt to get a more specific diagnosis and help his family determine the best educational program for David, they went to Johns Hopkins in Baltimore, MD.
There they learned that David had Batten Disease, a rare progressive disease in which he lacked an enzyme necessary to break down and remove the waste that occurs from cell activity in his neurons.
Batten disease is one of 50 diseases called lysosomal storage disorders (LSD), meaning that genetic mutations disrupt the cells ability to dispose of wastes. With Batten disease, cells are thrown out of balance with the build-up of proteins and lipids (fats).
The eyes are the first area to be affected since the optic nerve has such a high concentration of nerve cells. As the brain neurons slowly fill up with these deposits, the body shuts down. To this day there is no cure for Batten Disease, although some very exciting research is being conducted.
David battled Batten’s for thirteen years. On October 22, 2009 David passed away. David’s Refuge was formed in honor of David to encourage parents in similar situations to feel supported, restored and refreshed, to fight the good fight, to finish the race and to keep the faith.
To discover more go to David’s website using th link below.
David’s Refuge Website
A few more images of the girls at work.