Sudiksha Thirumalesh, 19, died last September at a hospital in Birmingham . But her family now face paying almost £5,000 to the DWP in a row over benefitsThe 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.
'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. Her father Thirumalesh Hemachandran told the Mail it was 'another devastating blow to our family'. Pictured: Sudiksha's family including her father, her mother Revathi Malesh Thirumalesh and her brother Varshan
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. 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. Pictured: Sudiksha with her mother aged five months
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 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.
Andrea Williams, chief executive of the Christian Legal Centre which is supporting Sudiksha's family in their fight for justice, said the bill should be waivedSudiksha Thirumalesh in her school photo aged 12When a person has mitochondrial disease the mitochondria in the cells are not producing enough energy for the cell. Sometimes they do not work at all, and sometimes they are just not very efficient.There is a huge variety in the symptoms and severity of mitochondrial disease.
News Birmingham NHS Charlie Gard
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