The mum of a boy with a terminal condition has spoken of her heartbreak at not being able to afford a coffin or a funeral for him as she battle the rising cost of living. Donna Brady, 38, is mum to little Romeo, aged four.
She was told during her pregnancy that he "wouldn't see his first birthday" due to his serious heart condition. But Romeo has already beaten the odds.
However Donna, from Camden, London, said she was struggling to give him a fulfilling life because of the pressures on her finances. She has charity support to give him some days out, but Donna worries constantly about how she will cope when the time comes.
She 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.
"I can see the change in him now and 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."
The Children’s Funeral Fund for England can help to pay for some of the costs of a funeral for a child under 18, but Donna said she would still struggle to get enough together to then claim some of it back. She said she doesn't have a large family to fall back on and is feeling the immense financial pressure right now, especially as Romeo requires 24-hour care.
Donna said she had gone from paying £42 a month for electricity to nearly £100. She has been trying to make savings where possible, but needs to use a lot of energy for Romeo's feeding pump.
Donna said: "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. The cost of travelling to hospital appointments has also risen. 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. His mum described him as having his heart "on the other side of his body and inside out".
Donna receives Disability Living Allowance (DLA) as she is a full-time carer for Romeo, and therefore unable to work. They are also supported by the charity The Rainbow Trust, which she says has been a "godsend". The charity helps them do fun activities, like going to the zoo, much to Romeo's delight given his love for animals, particularly his own cat. Romeo aspires to be a vet and has just started school.
While the charity supports many of the estimated 86,000 children in England with life-limiting or life-threatening conditions, Donna said she is calling on the government to do more to help struggling families, as she said the DLA doesn't go a long way.
Donna is doing her best to give Romeo a stimulating and fulfilling life while feeling like they are on "borrowed" time. She said they try to do things together like going to the Natural History Museum, but factoring in travel and lunch can be a squeeze.
She added: "He loves magazines and reading, 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."
MyLondon has set up a GoFundMe page for Donna and Romeo, to raise funds to have a special day together. You can donate here.
For further information or to make a donation to Rainbow Trust visit www.rainbowtrust.org.uk
