Nathan was a healthy, vibrant, generous, loving, husband, father, and grandfather. After innumerable negative tests, he received his CJD diagnosis on his 71st birthday. At the time we had no idea what that meant, except that it was non treatable and rapidly fatal. There was no time to mourn this diagnosis. We were too busy attempting to manage his symptoms and keeping him comfortable and safe.
The CJD Foundation was the sole resource that understood this disease and its implications. Our doctors, our hospice, and ultimately, our skilled nursing facility had never treated this rare and ravaging illness. The Foundation’s 800 number was the last resort when we were crashing and without answers on how to handle the downward spiral of cognitive and physical disabilities. They were kind and empathetic and experienced in dealing with the frightening complications.
If I could have my wish, there would be no more Nathans who would have to suffer through CJD. We were blessed with devoted family, friends, clergy, health professionals, and most importantly our faith to help us live one day at a time until Nathan went to his eternal rest 5 months after his diagnosis. If you are able, please help support this unique and invaluable organization that provides a singular lifeline to those in desperate need of counsel. Then, let’s do everything possible to eradicate prion diseases that destroy the essence of those whom we love.
Margaret Christian
nancy santana
