Sarah Hughes is 24, but she’s just now learning to live.
For the first 23 years of her life, she was in constant pain.
She was diagnosed when she was 11 months old with systemic juvenile idiopathic arthritis. Her aunt had gone through the same disease, and had died from it at the age of 37.
This autoimmune disease affects multiple organs. When Sarah was just a baby, she suffered fevers of up to 107 degrees, and her joints began swelling with little pockets of fluid.
Her parents tried their best to let her live a normal life. She was given low-dose pain medication, given braces so her joints wouldn’t develop deformed, and soon she was riding horses.
However, at the age of four, she began getting migraines, and soon her mother, Fiona, was told that Sarah had arthritis in the vertebrae right beneath her skull.
“It was the first time I was told that her life was in jeopardy,” Fiona told CNN.
Soon, the arthritis attacked her heart and lungs, as well as her digestive and immune systems. She was put on TNF blockers to block the inflammation.
She tried to go to elementary school, but she was forced to move on crutches and faced constant bullying. She also had to be fed through a tube in her stomach. Soon, she was a “homebound” learner.
Her condition only got worse as she got older. Soon, doctors told Fiona that it was unlikely they could do anything for her, and gave her advice on how to keep her comfortable as she slowly died.
Soon, she went to the National Institutes of Health in Maryland, where specialists said they hadn’t seen anything like it. They couldn’t do much to help, but they thanked the family for giving them the opportunity to learn about the disease to better treat others.
There was only one treatment option left: stem cell therapy. Her body had been rejecting donor cells, but they hoped stem cells could help regenerate her damaged cells and repair her immune system.
In order to get the procedure without going through the FDA’s processes, which may have meant she would die before receiving it, she had her procedure done in Mexico.
Within mere hours of her stem cell treatment, Sarah experienced remarkable change. She sat up, talked, and walked with aid. She even had an appetite.
Now, a year later, she can eat without a tube, her infections are gone, she has no more spinal leakage, and her eyes are no longer inflamed.
She will continue stem cell treatment into 2017, but until then, she’s going to college, back to riding horses, learning to drive, and trying to catch up on a normal life.
