The devout Christian family of a teenager who tragically died while fighting for life-preserving treatment to be continued are to challenge strict reporting restrictions which mean her identity still cannot be revealed.
The 19-year-old, named only as ST because of the court order, died last week from a rare genetic disorder.
At the time of her death, she was locked in a legal battle with the NHS after the doctors caring for her concluded that she was "actively dying" and should be moved to palliative care.
ST had been seeking permission to go to Canada for experimental treatment and said she wanted to "die trying to live".
An order by the Court of Protection barred her identity from being made public, a ruling her legal team said prevented her family from raising funds for her travel to Canada.
Her devout Christian family are now seeking to overturn the "de-humanising" court order.
They are being supported by the Christian Legal Centre (CLC) and will present their case at a hearing in the Court of Protection on Friday.
The CLC said that the family had been left so fearful by the restrictions that they were afraid to even tell friends and family of ST's passing.
Speaking ahead of Friday's hearing, the family called the current system "cruel".
"We are deeply grieving the loss of our daughter but face no choice but to continue to fight for justice. What has happened to ST and us over the past year must be fully exposed so that no one else has to go through what we have," they said.
"We are still in shock over how we and our daughter have been 'dehumanised' by the hospital and the courts. We could have been sent to prison if we had named her in a fundraiser for the treatment.
"When our daughter was most in need of people's prayers and practical help, she was taken to court by the NHS and had severe reporting restrictions placed upon her. We were gagged and 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. We chose to give up everything for our daughter.
"On top of everything, we have had to live in fear, constantly self-censoring and having to watch everything we say about what we are facing, even to close friends and family.
"This cannot be right and must not happen to another family. ST has a name and her story and ours must now be told.
"We are not out for revenge, but we want justice for our daughter and for other victims of this cruel system."
CLC chief executive, Andrea Williams,said: "The case of ST is not just about justice for her and her family but ensuring that justice in such cases is done with full transparency and proper scrutiny.
"We are seeking justice for her and for all those affected. These restrictions are untenable and cannot stand."
