Family of boy with rare cancer warn parents are forced to choose cash or kids (2025)

Victoria McDonald and Andrew Rae's son Calum was diagnosed with high-risk neuroblastoma but the dad Andrew was forced to return to work and leave Victoria at Calum's beside to pay their bills.

The parents of a six-year-old cancer victim have warned families are being forced to choose between a financial crisis and supporting desperately ill children.

Victoria McDonald and Andrew Rae were left devastated when their son Calum was diagnosed with high-risk neuroblastoma – a rare and aggressive cancer with a five-year survival rate of about 50 per cent – in January 2023.

Calum immediately began gruelling treatment and required huge amounts of support, but Andrew, 37, was forced to make the heartbreaking decision to return to work leaving Victoria at his bedside in order to pay the bills.

And they are now demanding the Scottish government provides more cash to families of sick children to keep families together.

Victoria, 35, from Troon, Ayrshire, also mum to Emily, now three, said: “Andy had to go back to work six weeks after Calum was diagnosed and any more time he needed off to be there for Calum during his treatment was unpaid.

“It was extremely difficult. As a parent, your world is turned upside down. You are left emotionally broken watching your child go through everything they have to.

“Your child wants and deserves both parents there but the reality is you are forced into a position to make choices in terms of financial security or your child having both of you there to hold their hand.

"It has a huge impact on parents emotionally as one of you watches your child in pain without your spouse there to support you and give them some comfort.

“Calum turned six and had his birthday at the hospital on Friday as he was having chemo.”

In August 2023, Sunday Mail readers rallied around little Calum. And a fundraising appeal to send the youngster to the US to take part in a ground-breaking US drug trial that could prolong his life raised over £300,000.

However Calum, who celebrated his sixth birthday in hospital last Friday and hasn’t been to the US yet, has since relapsed and is now undergoing treatment again.

Now his parents are backing a campaign by charity It’s Never You calling for financial support for parents of critically ill children from the day they are diagnosed.

Victoria added: “We back It’s Never You’s petition because in the most horrific time imaginable, it’s awful that parents fighting to get through each day for their child are also juggling financial pressures.”

The charity is calling for parents to get the vital support and have written to Shirley-Anne Somerville, the Cabinet Secretary for Social Justice to highlight their plight.

Teacher Victoria has taken a career break in order to be at her son’s side as he fights his illness.

She added: “Calum is going through relapse treatment. Luckily, we now receive child disability payment which has allowed me to take a career break and it is a huge financial support.

“However there is a qualifying period and a huge backlog in processing.

“We have had a good response from his tumour but he has some stubborn bone spots that are taking longer to clear.

“Last year he started school and loves being with his friends when he can attend. Despite everything Calum is doing well and is his usual happy and playful self. He loves playing with the nurses and doctors and continues to take everything in his stride.

“He is a remarkably resilient and affectionate little boy who loves his family.”

The family’s heartbreak first started when Calum got chickenpox.

Tests revealed he had neuroblastoma and Victoria and Andrew were told Calum’s cancer was stage M – where the disease has spread to other parts of the body.

Neuroblastoma affects about 100 children each year in the UK, six per cent of the total number of childhood cancer diagnoses.

High-risk neuroblastoma has one of the lowest survival rates of all childhood cancers.

A Scottish government spokesperson said: “Our thoughts are with the Rae family and their son Calum at this difficult time. Disability benefit applications on behalf of terminally ill children are fast-tracked so they and their family automatically receive highest rates of assistance they are entitled to, with no award review unless there is a change of circumstances.

“We urge anyone applying on behalf of a terminally ill child to use this faster dedicated terminal illness route to ensure their application is given priority. On average it takes three working days to process an application for Child Disability Payment through this route.

“Terminally ill children automatically qualify for highest rate of the care component of Child Disability Payment from birth. Unlike the rest of the UK, eligibility in Scotland is not affected by how long the terminally ill person has to live.

“There is no requirement for someone to have a confirmed diagnosis to apply for Child Disability Payment as a decision about a person’s eligibility is based on an understanding of their level of needs, rather than a diagnosis.”

Parents can apply for Child Disability Payment, which can provide up to £180 a week depending on need to help cover the extra costs of look-ing after a child who is disabled, has a long-term health condition or is terminally ill.

Social Security Scotland has paid over £1billion to the families of over 97,000 youngsters since the launch of Child Disability Payment in July 2021.

The Neonatal Care (Leave and Pay) Act 2023 which comes into effect across England, Scotland, and Wales on April 6 applies to parents of babies who require neonatal care within the first 28 days of birth who can take up to 12 weeks of statutory neonatal care leave.