Family of teenager locked in end-of-life care battle told to repay thousands in child benefits

The family of Sudiksha Thirumalesh, who died during an end-of-life care court battle, have been told to repay thousands of pounds in another 'devastating blow' for the family

The grieving family of a teenager locked in an end-of-life care battle have been told they must repay thousands of pounds in child care benefits.

Sudiksha Thirumalesh, 19, had a rare degenerative disease and died from a cardiac arrest last September amid a row with an NHS Trust to remove her life-preserving care. Now, the Department for Work and Pensions has claimed Suiksha was not entitled to childcare payments on Universal Credit before her death - because she was in hospital for more than six months. Her heartbroken parents had already spent their life savings on legal fees and are now facing demands for almost £5,000.

The former straight-A student had mitochondrial depletion syndrome but contracted Covid last year. The virus left her relying on a ventilator, a feeding tube, and regular dialysis. Thirumalesh Hemachandra has since spoken out on the most recent "devastating blow". Mr Hemachandra, speaking to MailOnline, said: "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. At the time of the ongoing legal battle, Sudiksha could only be identified as ST because of a court order lifted only after her death.

Her father added: "The transparency order prevented us from getting the help we needed during the toughest time of our lives." Despite doctors saying they would not stand in their way of Sudiksha's aim of joining clinical trials in Canada, the court order prevented the family from publicly raising the £1.5million needed for the journey. Mr Hemachandran has since explained the benefits the family used as they were forced to sell their family heirlooms and give up their store to help make payments for their daughters care.

"We were with our daughter 24/7, my wife didn't leave her side and we had to give up running our shop," he 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." The DWP has deemed Hemachandra's family was overpaid £4,738.80 as Sudiksha was "temporarily absent from the household for more than six months".

The trust, which cannot be named for legal reasons, told the court the teenager was "actively dying" and de-escalating her intensive care was the most humane decision. Sudiksha died on September 12. The family went to the High Court last week to remove reporting restrictions preventing her name from being published in the press. They are still fighting for restrictions on identifying the NHS trust, hospital and clinicians involved to be lifted.