The mum who’s paid 40% tax all her life can’t afford to buy a gravestone for her husband and daughter’s grave
A former midwife who is grieving over the loss of her daughter and husband said she is “hanging on by her fingertips” as she is now in her ninth week of not receiving Universal Credit.
Mary Van Der Merwe, 49, who has lived in Burscough for 19 years, has received one emergency payment of £274.20 in eight weeks after the documents she provided to get the Universal Credit, which she is entitled to, “got lost.”
However, Mary’s situation is more complex as she is grieving the loss of her nine-year-old daughter Esme who died in January this year after suffering with a rare brain disorder, Rett Syndrome. This required Mary and her late husband Pieter who worked as a pharmaceutical manager, giving up work to provide their daughter with 24-hour care.
In 2011, due to Government spending cuts, the family didn’t receive the vital medical support to care for Esme and after fighting for years they won a High Court case against their local authority and she became the first child to be supplied with a qualified nurse.
Mary, who is a registered nurse and midwife, said: “My husband was a very good man, everyone was shocked by his death and I wasn’t, because we had nine years of fighting the system. We got the care package eventually but Esme still needed two nurses because her condition was so complex. She couldn’t walk, eat by herself and she had repeated respiratory arrests. I’m physically and mentally exhausted.
“I was on call for Esme 24-hours a day, seven days a week and now all I’m asking is for society to let me grieve and have five or six months.
“I want to make some noise about what happens to these children’s families after they die because I know other parents are struggling. I’m now in my tenth year of fighting the system. They think when these children die that if you’ve got a pulse you can just carry on.
“The sad thing is I can’t even afford to put a gravestone on Pieter or Esme’s grave and it just makes me want to cry.”