Donna Brady, 38, says the rising cost of living has left her struggling to get by. Especially because of her son Romeo’s needs, mixed with the rising costs of electricity, have seen her bills skyrocket.
Romeo was born with Total Anomalous Pulmonary Venous Return (TAPVR) which sees oxygen-rich blood return to the wrong side of his heart and he also has dextrocardia which means his heart is on the right side of his chest instead of the left. His mum described him as having his heart “on the other side of his body and inside out”.
When Donna was pregnant she was told he “wouldn’t see his first birthday” because of his serious heart condition. Now age four, Romeo has defied the odds but his mum says she is now struggling to make his life fulfilling while he is still with her due to squeezed finances.
She says she now lives in fear of what she will do when Romeo’s loses his battle.
“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.”
“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.