Dana and her mother Ronda
Since her diagnosis, Dana experienced many changes in her life. In the last years she lost her independence of walking without help, dressing herself, bathing, going to the bathroom, getting in and out of bed, bladder control, and problems with talking and eating.
For the past 17 years the disease slowly took over her body – leading to her death on April 25th, 2023.
Dana had seen doctors at Vanderbilt Hospital in Nashville, TN and was accepted for a trial drug program at UCFS Benioff Children’s Hospital based in Oakland, California under the direction of Dr. Elliott Vichinsky- a renowned disorder specialist – who joined the Dana Jones Foundation as a Board Director and Medical Advisor.
The medicine is called Deferiprone, and has been shown to have the ability to pass through the blood-brain barrier and remove the accumulation of heavy metals such as iron. We continue to pray for the doctors and scientists that are working on a cure and to give them the knowledge to help others suffering from NBIA.
Prior to the disorder’s onset, Dana was very active and loved to do everything. She sang solos in school programs, loved swimming, skating, bowled on a team in a local league, was a member of Girl Scouts of America for 9 years, and for 4 years played flute in her high school marching band.
Ronda, Dana’s mother lifts Dana manually into their car.
Dana was a very happy girl and loved to sing, go to the movies, Tuesday morning bible study and water class at the YMCA. In the final years she was not in pain and we are thankful that she did not have the muscle spasms that are common to NBIA patients. Her fate was sealed, yet she enjoyed life, her disabilities never affected her great attitude and constant smile.
We are grateful and blessed for the support we have in our family, friends, and church as they continue to support or efforts in raising awareness and fundraising, in hopes of finding a cure.