I can't afford a coffin for my ill son: Mother makes cry for help

2022-10-21

I can’t afford a coffin for my terminally-ill son: Mother struggling with cost-of-living crisis makes heart-breaking cry for help to make dying four-year-old’s final days ‘fulfilling’ and fund funeral

Donna Brady, 38, was told that her son, Romeo, ‘wouldn’t see his first birthday’
Now aged four, Romeo has defied the odds – despite his serious heart condition
But the cost of living means Ms Brady is ‘terrified’ by funeral and coffin prices

A mother whose son is living with a terminal illness fears she may not be able to give him a proper funeral or even afford a coffin due to the rising cost-of-living crisis.

Donna Brady, 38, from Camden, north London, was told during pregnancy that her son, Romeo, ‘wouldn’t see his first birthday’ due to a serious heart condition.

Now aged four, Romeo has defied the odds.

However, the rising cost of living means that Ms Brady is struggling to make his life ‘fulfilling’, she says, due to squeezed finances.

While she has support from a charity to give him occasional days out, she faces constant worries about what she will do when the devastating time comes and her son dies.

Donna Brady, 38, from Camden, north London, was told during pregnancy that her son, Romeo, ‘wouldn’t see his first birthday’ due to a serious heart condition

Ms Brady said: ‘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.’

Although Romeo has defied the odds, the rising cost of living means that Ms Brady is struggling to make his life ‘fulfilling’, she says, due to squeezed finances

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

The Children’s Funeral Fund for England can help towards paying for funerals of under-18s, but Donna said she would still struggle to make her contribution.

Without a large family to fall back on, Ms Brady is feeling immense financial pressure – particularly because Romeo requires 24-hour around the clock care.

She has gone from paying £42 a month for electricity to nearly £100 and while trying to cut corners where possible, she needs to use a lot of energy for Romeo’s feeding pump.

Ms Brady 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.

‘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.’

He also has dextrocardia, which means his heart is on the right side of his chest instead of the left.

About Romeo’s condition: TAPVR

Total anomalous pulmonary venous return (TAPVR) is a rare congenital (present at birth) defect.

With TAPVR, all four pulmonary veins do not connect normally to the left atrium. Instead, the four pulmonary veins drain abnormally to the right atrium through an abnormal connection.

This means that oxygen-rich blood returns to the wrong side of Romeo’s heart, mixing with blood with lower oxygen levels and affecting how much oxygen can be pumped around his body.

Symptoms usually occur at birth or very soon afterwards.

Infants with TAPVR can have a bluish looking skin color, called cyanosis, because their blood doesn’t carry enough oxygen. They can also have problems breathing, pounding heart, weak pulse, ashen or bluish skin color, poor feeding and extreme sleepiness.

His mum described him as having his heart ‘on the other side of his body and inside out’.

Donna receives Disability Living Allowance (DLA) for children as she is a full-time carer for Romeo, and therefore unable to work.

The pair are also supported by the The Rainbow Trust charity, which Donna 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 benefits don’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.

Donna 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 on behalf of Ms Brady to raise funds for her and Romeo to have a special day together.

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