A HEARTBROKEN mum fears she won’t be able to afford a coffin or funeral for her terminally ill son because bills are so high.
Donna Brady, 38, says the rising cost of living has left her struggling to get by.
Donna Brady fears she will not be able to afford a coffin or funeral for terminally ill son Romeo when the tragic day comes
Romeo, four, has a serious heart condition and wasn’t expected to see his first birthday
Especially because her son Romeo’s needs, mixed with the rising costs of electricity, have seen her bills skyrocket.
When the North London mum was pregnant with her now four-year-old, she was told he “wouldn’t see his first birthday” because he had a serious heart condition.
She says she now lives in fear of what she will do when Romeo’s terminal illness beats him.
Donna told MyLondon: “I was told to prepare for the worst when I was pregnant, so while everyone else was shopping for prams, I was shopping for coffins.
“I’m overjoyed I got many more years with him. But I’m living on my nerves and my anxiety 24 hours a day, because I don’t know if I’m going to wake up and my baby’s gone and how I’m going to cope when he passes.”
The mum said she has seen a change in her son lately, adding: “I know the time is coming soon.
“But a coffin is unbelievably expensive and all of the other funeral costs. That terrifies me to be honest.
“And if he passes away tomorrow I wouldn’t want him sitting in a freezer while I scrape together to try and bury him.
“I just would want him to lay him to rest straight away.”
While the Children’s Funeral Fund for England would help pay for some of Romeo’s funeral costs, Donna said she would struggle to get the money together.
The mum says she has gone from paying £42 a month for electricity to nearly £100 – despite trying to cut corners where possible.
She explained: “He throws up quite a lot so the washing machine is constantly going.
“And I need the electricity on all the time as Romeo has a feeding pump that needs to be permanently charged as it is the only way he can get liquid food and fluid into his body when he is unwell.
“Romeo also needs his TV as often this is his only source of comfort, especially after spending a whole year in hospital and following an entire year at home during the pandemic, it is these little things in life that keep him going.”
Donna said the cost of travelling to medical appointments had also climbed.
She added: “We use taxis or Ubers as the risk of infection is too high on public transport but these are now more expensive.”
Romeo was born with Total Anomalous Pulmonary Venous Return (TAPVR) which sees oxygen-rich blood return to the wrong side of his heart, mixing with blood with lower oxygen levels and affecting how much oxygen can be pumped around his body.
He also has dextrocardia, which means his heart is on the right side of his chest instead of the left.
Donna receives Disability Living Allowance (DLA) as she is a full-time carer for Romeo, and therefore unable to work.
She said they are also supported by the charity The Rainbow Trust, which she says has been a “godsend” as it helps them do fun activities.
But Donna said while she is doing her best to give Romeo the best life possible, she feels like they are on “borrowed” time.
She added: “He loves magazines but they have gone up from £4.50 to £6.99.
“I have to say to him ‘we can get milk, bread and butter or a magazine’. To say no to a child that hasn’t got long left is really, really difficult.
“He’s never going to finish school or go to college or meet someone and fall in love and go on holidays and have a job and all of that. So that’s why it’s really difficult for me to say no to him.
“Because of his condition I want to give him everything to make life as easy as possible and to create amazing memories but these are truly worrying times.”
A GoFundMe page has been set up for Romeo to have a special day out, you can donate here.
