Since her diagnosis, Dana has experienced many changes in her life. It continues to be a challenge and her symptoms are constantly changing. She has 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 12 years the disease has slowly taken over her body – the ultimate outcome is not encouraging, and without a cure, her life expectancy is in question. Frustrated, we have tried to seek out the best medical help possible.
Dana has seen doctors at Vanderbilt Hospital in Nashville, TN and has recently been 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 has recently 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 Dana and the 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.
Dana is a very happy girl. She still loves to sing, go to the movies, Tuesday morning bible study and water class at the YMCA. So far she isn’t in pain and we are thankful that she does not have the muscle spasms that are common to NBIA patients. Her fate is sealed, yet she enjoys life even though there is pain to come and her disabilities never affect 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.