19-year-old girl says ‘let me live’ – stop hospital withdrawing treatment
Update – 22 Sep 2023:
Following ST's death on 15 Sep, a separate petition was launched urging the Health Secretary to immediately lift the reporting restrictions on the courageous 19-year-old's case and to initiate a review into the draconian use of reporting restrictions.
Today, the family of 'ST' secured the right to name her and share her story!
It means Sudiksha Thirumalesh can be named, and her family can now share her story and their ordeal on their terms.
Update – 15 Sep 2023:
'ST', the subject of this petition has tragically died. She and her family still cannot be identified. You can still sign the petition and choose the option to receive updates from Christian Concern if you want to find out how to support the family going forward.
An NHS hospital is trying to stop treating a 19-year-old girl, effectively ending her life.
But the girl, who is conscious, wants to continue treatment so that she can seek experimental treatment. She has made clear to the court, that if she’s going to die, she wants “to die, trying to live”.
The girl and her family are banned from speaking out publicly due to a court’s ‘transparency order’ which stops anyone from identifying them.
Be their voice. Sign our petition to tell Health Secretary Steve Barclay to intervene.
The girl, who can only be known as ‘ST’, is suffering from a rare genetic mitochondrial disease which causes muscle weakness, loss of hearing and damage to her kidneys. She is dependent on regular dialysis and other intensive care, but the condition does not affect the functioning of her brain.
Nevertheless, the hospital wants to end her treatment, arguing that she is “actively dying” and asking the Court of Protection to authorise a palliative care plan against her wishes. A judge has now ruled that ST lacks the capacity to have a say in this life-or-death matter via her own lawyers.
Even though two psychiatric experts instructed by the hospital told the court ST had the mental capacity to make decisions, the judge decided that the Court of Protection should make the decisions about her treatment based on her ‘best interests’. In many other similar cases, courts have nearly always claimed that someone’s ‘best interest’ is to die, even when alternative treatment has been offered.
Sign the petition, asking the Health Secretary to stop this injustice.
A tightly knit Christian family
ST has grown up in a tightly knit Christian family who have spent months resisting the legal proceedings brought by the NHS to end her life. Despite her illness, she had attended a regular school, achieved good GCSE results and was studying for her A-levels when in August 2022, she caught Covid and her health deteriorated. She has been in an intensive care unit ever since.
In November 2022, ST issued lasting powers of attorney to authorise her parents to make decisions on her behalf in the future if she was to lose mental capacity to do so in the future. In February 2023, the hospital asked the Court of Protection to set aside the document on the grounds that she did not have mental capacity to sign it. The hospital then made a further application to approve a palliative care plan, said to be in ST’s best interests but which would lead to her death within a few days.
Like the family of Charlie Gard, ST’s only hope of cure is the experimental treatment known as nucleotide therapy, which is only available abroad. Her family wants to appeal to the public to raise funds to enable her to participate in a clinical trial which is expected to start in Canada later this year.
However, in March 2023, the court made a “Transparency Order” which imposes draconian restrictions on reporting any information which might lead to identification of ST, members of her family, or the hospital. This prevents ST and her parents from giving public media interviews, making it very difficult to appeal for funds.
The transparency order was made at the request of the NHS Trust without any reasons.
ST’s parents made an urgent application to reconsider the transparency order to enable them to raise funds for ST’s treatment in Canada. The court has held three hearings since that time, but has not found the time to consider that application to date.
This injustice robs ST of any chance to appeal to the public and make her case for life.
Sign the petition now to let ST speak and give her a chance to live.