Fresh ordeal for grieving family of teen girl with rare degenerative disease who died fighting NHS legal battle to get doctors to withdraw treatment as they're told to repay thousands in child care benefit

The grieving family of a teenager who died while locked in an end-of-life legal battle with the NHS is being forced to repay thousands of pounds in child care benefits.

Sudiksha Thirumalesh, 19, who had a rare degenerative disease, died last September as she fought doctors' attempts to withdraw treatment and move her to end-of-life care.

In a fresh blow to her family, the Department for Work and Pensions has claimed the A-level pupil was not entitled to the childcare element of the Universal Credit paid before her death because she was in hospital for more than six months.

Her devastated parents, who already spent their life savings on legal fees fighting the NHS, have been left facing demands to cough up almost £5,000, despite keeping the benefits department up to date with their daughter's plight.

'This has come as another devastating blow to our family. It feels like the system is kicking us while we are down. We did everything by the book and have been punished for it,' her father Thirumalesh Hemachandran told the Mail.

Sudiksha, who suffered from the same rare genetic mitochondrial disorder as little Charlie Gard, was admitted to Birmingham's Queen Elizabeth Hospital in September 2022 after contracting Covid.

Mr Hemachandran informed the DWP of her circumstances, telling officials that despite her ill health his brave daughter was determined to continue her A-levels at the hospital's school.

Sudiksha's parents, who were forced to give up running their shop to care for her when she was moved to the intensive care unit, continued to receive payments from the department.

At the time, Sudiksha, who could be identified only as ST because of a draconian court order which was lifted after her death, was fighting in the courts to prove she had the capacity to determine her own fate.

Her father added: 'The transparency order prevented us from getting the help we needed during the toughest time of our lives.'

Sudiskha had hoped to get well enough to join clinical trials in Canada but while her doctors said that they would not stand in the way of a transfer, her family say the reporting restrictions stopped her from publicly fundraising for the £1.5million needed for the journey.

Doctors treating her argued that, due to her deteriorating and incurable condition, the kindest course would be to 'de-escalate her intensive care' and make her as comfortable as possible.

Her parents, who sold their family heirlooms to pay for lawyers to fight for the right to continue her treatment, had used the child care payments to help cover day-to-day expenses.

'We were with our daughter 24/7, my wife didn't leave her side and we had to give up running our shop,' Mr Hemachandran said.

'We relied on the payments for our day to day expenses. It was used to buy food in the hospital canteen and the cost of the constant travel to and from hospital.

'I was updating Universal Credit all the time. But now they are demanding the money back. It's creating more hardship and burden for me…I am already struggling to make ends meet.'

As they continue to grieve, the devout Christians face a £4,738.80 DWP bill. They were told Sudiksha was classed as 'temporarily absent from the household for more than six months' and therefore they were overpaid between February 2023 and July 2023.

Mr Hemachandran immediately requested a 'mandatory reconsideration' and despite a plea for leniency because of their tragic circumstances, the family was told the decision still stands.

In a letter signed 'Office Manager', the DWP admitted the family 'constantly kept UC up to date with all the relevant changes.'

It added: 'While I acknowledge and sympathise with the situation you were in ... I am unable to remove the overpayment as you would not have been entitled to the child element from six months after her admission to hospital and for the purposes of UC, no special circumstances apply.'

Andrea Williams, chief executive of the Christian Legal Centre which is supporting the family in their fight for justice, said the bill should be waived. 

'A good and humane society does not treat a family in the middle of such a tragedy like this,' she said. 'Forcing them to repay the money is not in the public interest and it should be waived.'

The family was left devastated after a judge ruled that Sudiksha lacked the mental capacity to make her own decisions and that her fate must be decided by the courts. 

The remarkable teenager died of a cardiac arrest just days after speaking to the Mail about her ordeal and her determination to fight the case from hospital.

Her family is set to continue her battle in a hearing at the Court of Appeal on Wednesday.

A DWP spokesman said: 'We express our sympathies to Sudiksha Thirumalesh's loved ones and are conducting a review of this case as a matter of urgency.'