S.T., the 19-year-old girl with a degenerative disease who wanted the chance to fight for her life, has died after the National Health Service (NHS) denied her the opportunity to make her own medical decisions.

Earlier this month, S.T.’s story made international headlines. She had a mitochondrial disease, allegedly similar to that of Charlie Gard, who also was removed from life support by the NHS. S.T. had lived in an intensive care unit (ICU) for the past year, receiving nutrition through a gastrostomy tube, using mechanical ventilation, and receiving regular dialysis. She also has sight and hearing loss, muscle weakness, bone disease, and damage to her kidneys and lungs. Yet her brain function remained unchanged.

Two psychiatrists examined S.T. and testified that she did not have any mental illnesses, and had the mental capacity to make her own decisions. And her decision was to fight for her life for as long as she could. “This is my wish,” she said. “I want to die trying to live. We have to try everything.”

The court admitted that the experimental treatment S.T. wanted to try could help, but as her life would still end “prematurely,” it was not seen as being worth the effort.

“At the heart of the issues in this case is what ST and her family perceive to be a ray of hope in the form of an experimental nucleoside treatment outside the United Kingdom which might offer her hope of an improved quality of life, albeit a life which is likely to end prematurely in terms of a normal life expectancy,” Mrs. Justice Roberts said, adding, “In my judgment, and based upon the evidence which is now before the court, I find on the balance of probabilities that ST’s complete inability to accept the medical reality of her position, or to contemplate the possibility that her doctors may be giving her accurate information, is likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain.”

Though her family vowed to appeal the ruling, they didn’t have the time. S.T. passed away just weeks later. And, because of the court order, they weren’t even allowed to speak S.T.’s name.

“Even now, in the hour of our grief, we continue to be gagged by the court order from saying her name aloud,” they said in a statement. “We lost our beautiful and courageous daughter, known to the world as ST. To us she has a real name. To her family she was everything and we will cherish and never forget the 19 years we had with her. The past year, however, has been one of struggle, even torture, for ST and for her family at the hands of the hospital and the Court of Protection.”

Now, the heartbroken family is grappling with financial devastation, as well as the loss of S.T.’s life.

“We were essentially given a choice: give up and let us prepare your daughter for death, or have your lives dismantled and torn part if you wish to resist us,” they said. “We chose to give up everything for our daughter. Day after day in the intensive care ward we and S.T. had to exist and keep going in an environment that had given up on her right and wish to live.”

They concluded that they will continue fighting in S.T.’s memory. “She was in a race against time to escape ‘the system’ and the certain death it wished to impose on her. The system has now succeeded, but this is not the end,” they said. “Despite her anonymity, she has been able to tell her story and to show the world what has happened to her, and what could happen to any of us. We want justice for our daughter and for other victims of this cruel system.”

S.T., the 19-year-old girl with a degenerative disease who wanted the chance to fight for her life, has died after the National Health Service (NHS) denied her the opportunity to make her own medical decisions.

Earlier this month, S.T.’s story made international headlines. She had a mitochondrial disease, allegedly similar to that of Charlie Gard, who also was removed from life support by the NHS. S.T. had lived in an intensive care unit (ICU) for the past year, receiving nutrition through a gastrostomy tube, using mechanical ventilation, and receiving regular dialysis. She also has sight and hearing loss, muscle weakness, bone disease, and damage to her kidneys and lungs. Yet her brain function remained unchanged.

Two psychiatrists examined S.T. and testified that she did not have any mental illnesses, and had the mental capacity to make her own decisions. And her decision was to fight for her life for as long as she could. “This is my wish,” she said. “I want to die trying to live. We have to try everything.”

The court admitted that the experimental treatment S.T. wanted to try could help, but as her life would still end “prematurely,” it was not seen as being worth the effort.

“At the heart of the issues in this case is what ST and her family perceive to be a ray of hope in the form of an experimental nucleoside treatment outside the United Kingdom which might offer her hope of an improved quality of life, albeit a life which is likely to end prematurely in terms of a normal life expectancy,” Mrs. Justice Roberts said, adding, “In my judgment, and based upon the evidence which is now before the court, I find on the balance of probabilities that ST’s complete inability to accept the medical reality of her position, or to contemplate the possibility that her doctors may be giving her accurate information, is likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain.”

Though her family vowed to appeal the ruling, they didn’t have the time. S.T. passed away just weeks later. And, because of the court order, they weren’t even allowed to speak S.T.’s name.

“Even now, in the hour of our grief, we continue to be gagged by the court order from saying her name aloud,” they said in a statement. “We lost our beautiful and courageous daughter, known to the world as ST. To us she has a real name. To her family she was everything and we will cherish and never forget the 19 years we had with her. The past year, however, has been one of struggle, even torture, for ST and for her family at the hands of the hospital and the Court of Protection.”

Now, the heartbroken family is grappling with financial devastation, as well as the loss of S.T.’s life.

“We were essentially given a choice: give up and let us prepare your daughter for death, or have your lives dismantled and torn part if you wish to resist us,” they said. “We chose to give up everything for our daughter. Day after day in the intensive care ward we and S.T. had to exist and keep going in an environment that had given up on her right and wish to live.”

They concluded that they will continue fighting in S.T.’s memory. “She was in a race against time to escape ‘the system’ and the certain death it wished to impose on her. The system has now succeeded, but this is not the end,” they said. “Despite her anonymity, she has been able to tell her story and to show the world what has happened to her, and what could happen to any of us. We want justice for our daughter and for other victims of this cruel system.”