A Christian teenager who was battling to keep her life-preserving treatment going has died after suffering a cardiac arrest.
The 19-year-old, who can only be named as ST due to court restrictions, was locked in a legal battle against an NHS trust following her doctors' decision to stop her treatment for mitochondrial depletion syndrome (MDS).
The rare genetic disorder required her to be in constant hospital care but didn’t affect her brain and was conscious and capable of communication. However, ST’s doctor believed ending the treatment was in the patient’s best interest as she was “actively dying”.
Earlier this week, her family announced her death. In a statement, they wrote: “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.”
In recent weeks, ST’s family had been fighting for the court order that prevented her for being named publicly, to be removed as they continued their appeal for permission to go to Canada for an experimental treatment. However, ST died before any further proceedings could be head.
The statement continued: “Mitochondrial depletion syndrome (MDS) is very rare, and the particular version ST had has only a few known cases in the world. The UK has no expertise in treating the condition but three hospitals in America and Canada had offered to treat ST. Because of the court proceedings, however, ST was blocked from going there and because of the gagging orders we could not fundraise to finance her treatment and transport.
“ST said she wanted ‘to die trying to live’. This was her only chance, and that chance was denied to her.
“The disease ST faced was immense, but she and we refused to give up hope, no matter how small that hope was. ST was a committed Christian and firmly believed that life is the most precious gift we have from God. Every family faced with such a challenge and tragedy should have the opportunity to leave no stone unturned when trying to save the life of their child.”
Next Friday, ST’s family, supported by the Christian Legal Centre, will appear at a hearing in the Court of Protection to ask for the reporting restrictions to be lifted.