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 household of a teen who died portion locked successful an end-of-life ineligible conflict with the NHS is being forced to repay thousands of pounds successful kid attraction benefits.

Sudiksha Thirumalesh, 19, who had a uncommon degenerative disease, died past September arsenic she fought doctors' attempts to withdraw attraction and determination her to end-of-life care.

In a caller stroke to her family, the Department for Work and Pensions has claimed the A-level pupil was not entitled to the childcare constituent of the Universal Credit paid earlier her decease due to the fact that she was successful infirmary for much than six months.

Her devastated parents, who already spent their beingness savings connected ineligible fees warring the NHS, person been near facing demands to cough up astir £5,000, contempt keeping the benefits section up to day with their daughter's plight.

'This has travel arsenic different devastating stroke to our family. It feels similar the strategy is kicking america portion we are down. We did everything by the publication and person been punished for it,' her begetter Thirumalesh Hemachandran told the Mail.

Sudiksha, who suffered from the aforesaid uncommon familial mitochondrial upset arsenic small Charlie Gard, was admitted to Birmingham's Queen Elizabeth Hospital successful September 2022 aft contracting Covid.

Mr Hemachandran informed the DWP of her circumstances, telling officials that contempt her sick wellness his brave girl was determined to proceed her A-levels astatine the hospital's school.

Sudiksha's parents, who were forced to springiness up moving their store to attraction for her erstwhile she was moved to the intensive attraction unit, continued to person payments from the department.

At the time, Sudiksha, who could beryllium identified lone arsenic ST due to the fact that of a draconian tribunal bid which was lifted aft her death, was warring successful the courts to beryllium she had the capableness to find her ain fate.

Her begetter added: 'The transparency bid prevented america from getting the assistance we needed during the toughest clip of our lives.'

Sudiskha had hoped to get good capable to articulation objective trials successful Canada but portion her doctors said that they would not basal successful the mode of a transfer, her household accidental the reporting restrictions stopped her from publically fundraising for the £1.5million needed for the journey.

Doctors treating her argued that, owed to her deteriorating and incurable condition, the kindest people would beryllium to 'de-escalate her intensive care' and marque her arsenic comfy arsenic possible.

Her parents, who sold their household heirlooms to wage for lawyers to combat for the close to proceed her treatment, had utilized the kid attraction payments to assistance screen day-to-day expenses.

'We were with our girl 24/7, my woman didn't permission her broadside and we had to springiness up moving our shop,' Mr Hemachandran said.

'We relied connected the payments for our time to time expenses. It was utilized to bargain nutrient successful the infirmary canteen and the outgo of the changeless question to and from hospital.

'I was updating Universal Credit each the time. But present they are demanding the wealth back. It's creating much hardship and load for me…I americium already struggling to marque ends meet.'

As they proceed to grieve, the devout Christians look a £4,738.80 DWP bill. They were told Sudiksha was classed arsenic 'temporarily absent from the household for much than six months' and truthful they were overpaid betwixt February 2023 and July 2023.

Mr Hemachandran instantly requested a 'mandatory reconsideration' and contempt a plea for leniency due to the fact that of their tragic circumstances, the household was told the determination inactive stands.

In a missive signed 'Office Manager', the DWP admitted the household 'constantly kept UC up to day with each the applicable changes.'

It added: 'While I admit and sympathise with the concern you were successful ... I americium incapable to region the overpayment arsenic you would not person been entitled to the kid constituent from six months aft her admittance to infirmary and for the purposes of UC, nary peculiar circumstances apply.'

Andrea Williams, main enforcement of the Christian Legal Centre which is supporting the household successful their combat for justice, said the measure should beryllium waived. 

'A bully and humane nine does not dainty a household successful the mediate of specified a calamity similar this,' she said. 'Forcing them to repay the wealth is not successful the nationalist involvement and it should beryllium waived.'

The household was near devastated aft a justice ruled that Sudiksha lacked the intelligence capableness to marque her ain decisions and that her destiny indispensable beryllium decided by the courts. 

The singular teen died of a cardiac apprehension conscionable days aft speaking to the Mail astir her ordeal and her determination to combat the lawsuit from hospital.

Her household is acceptable to proceed her conflict successful a proceeding astatine the Court of Appeal connected Wednesday.

A DWP spokesperson said: 'We explicit our sympathies to Sudiksha Thirumalesh's loved ones and are conducting a reappraisal of this lawsuit arsenic a substance of urgency.'