ORANGE PARK, Fla. -- Daniel Hopkins won't be able to go on stage for graduation later this month due to a rare brain disease, but Middleburg High School will come to him at Orange Park Medical Center for graduation.
His teacher, principal, and friends from Middleburg High School will gather with his family for a graduation ceremony hosted by the hospital Monday afternoon at 3pm.
"He is a trooper, everything he goes through is awesome," said his mother by his hospital bed on Friday afternoon.
Shelly Brannen's 21 year old son Daniel Hopkins is seriously ill with a disease called neuro-degeneration brain iron accumulation, N-B-I-A for short. Iron accumulation in the brain ganglia restricts nerve signals to the rest of his body. He was diagnosed with NBIA in 2001 at Johns Hopkins Hospital in Baltimore.
" And we were told that he would die by the time he was 13." said Brannen.
It is an extremely rare disease. Brannen says Hopkins is the only person in Florida with it that she is aware of, and only about 200 in the entire country.
" We know our time with him is short. It is limited, so we are just going to make the best of it. He can still laugh and smile , we are thankful for that."
Despite the prognosis of death as a young teenager, Hopkins went on to high school. A body wound made him worse in 2011 after basically being doctor free for 10 years. But he attended Middleburg High in a wheelchair as late as December. He was then homebound, but Middleburg teacher Clara Maynor came to his house and helped him meet the exceptional education requirements for a certificate of completion. Then she arranged this week for the school to come to him for a graduation ceremony hosted by the hospital.
"Excited. Very excited," said Brannen. "About this time last week I was in tears because he was going to miss his graduation because he was in the hospital. We had been looking so forward to it. He is going to wear a cap and gown and him and his teacher have been working on decorating his cap. Being able to see him graduate it is going to be awesome, ha, ha ha."
So little is known about the disease that doctors can't tell Brannen, her husband, and his 19 year old sister and 17 year old brother just how long they have remaining with Daniel. But mom senses him getting worse each day. " I can tell he is going down. Today he is not as aware as he was yesterday. He is sleeping a lot."
The 39-year old Brannen knows she will soon be planning funeral arrangements for her son, but she will be one proud mother when her son graduates Monday afternoon.
Just talking to Brannen you can see she is being strong through this difficult time. She has had Daniel's siblings, his aunt and grandmother to help spend time with Daniel who has been in the hospital this time since May 3rd. It is third hospital visit this year.
Brannen's husband William was recently diagnosed with colon cancer and is undergoing chemotherapy and can't come see Daniel at the hospital.