A teenager who tragically died while fighting against the decision of her doctors to end life-preserving treatment can be named after a court lifted reporting restrictions on Friday.
Sudiksha Thirumalesh, from Birmingham, died last week while locked in a legal battle to continue life-preserving treatment and be able to go abroad to take part in clinical trials.
The 19-year-old suffered from a rare genetic disorder. Clinicians caring for her concluded that she was "actively dying" and that palliative care should begin. Thirumalesh, who was conscious and able to communicate at the time, disagreed and said she wanted to "die trying to live".
Until yesterday she could only be identified by her initials ST because of a gagging order imposed by the court.
According to the Christian Legal Centre (CLC), which has been supporting the family, the restrictions prevented them from being able to fundraise for her to go abroad.
Ahead of the hearing, her devout Christian family had called the restrictions "de-humanising" and vowed to continue fighting them after their daughter's death so that they could name her and tell her story.
Following Friday's hearing, the family said they were "deeply disturbed" by their experience.
"After a year of struggle and heartache we can finally say our beautiful daughter and sister's name in public without fear: she is Sudiksha. She is Sudiksha Thirumalesh not ST," they said.
"Despite our grief and the continuing shock over everything we have been through, today a part of us is at peace."
They continued, "We did not look for this fight, this fight came to us from a 'system' that too readily gives up on life. We were brutally silenced, intimidated, and taken to court in the hour of our need.
"It is shocking that a family in the middle of stress and tragedy had a threat of imprisonment hanging over their heads.
"We have never been out for revenge, we just want justice and to be able to tell our and Sudiksha's story."
A decision on whether to lift restrictions on naming the hospital, hospital trust and clinicians involved has been adjourned until next week.
CLC chief executive Andrea Williams said: "This Christian family has shown courage in their most difficult hour facing the loss of their beloved Sudiksha. They stood firm in defending Sudiksha's life.
"This profoundly disturbing case has demonstrated the urgent need for an overhaul into how critical care decisions are made in the NHS and the courts. There is an urgent need for a more open and transparent system. Justice is done in the light and not behind closed doors.
"We are concerned about how many other patients and families have been through similar ordeals and have had to suffer in silence.
"This case should be a wake up call for the government to set up an urgent public inquiry into the practices of the Court of Protection and the Family Division surrounding end-of-life cases after a series of disturbing and upsetting cases."
