Jess Lusher and Tim Ross’ son Luke was diagnosed with embryonal rhabdomyosarcoma and has endured some intensive treatment.
Alongside the devastating diagnosis, and the pain of watching their child got through this treatment, the extra costs of cancer have been a massive strain on the family finances.
They’re now backing a petition to prime minister Theresa May to act now to reduce the financial burden of the serious illness.
Mum Jess said: “Everybody knows that a trip to hospital can be expensive.
“Car parking fees, money for food and drink, and the cost of having time off work all add up.
“For cancer patients like Luke and parents like us, this can go on for months, or even years at a time.
“For us, the hidden financial costs of cancer were devastating.
“When Luke was ill it became a huge struggle making ends meet - we even had to sell Tim’s van for some extra money.”
“I was sleeping on a camp bed in a small family room in the hospital, with my younger new-born son Euan in a Moses basket, and Tim was sleeping on the floor next to Luke’s bed, before CLIC Sargent intervened and we got a place at Billy’s House. It made such a difference.
“Then we found we were eligible to claim certain benefits.
“Tamsin, our social worker from CLIC Sargent, persuaded us that it was the right thing to do.
“Then she spent ages with us collecting all the information that we needed to fill the absolutely enormous forms in. It took the pressure off.”
Luke was chosen to be the face of Lidl’s £1m fundraising campaign earlier this year.
Jess says Luke being chosen made her ‘so proud’.
She added: “Luke is five now and has been in remission for almost two years.
“I feel so lucky to have our beautiful boy with us and I was so proud when earlier this year he was chosen to front the supermarket Lidl’s fundraising drive to raise £1m for CLIC Sargent.
“We were even prouder when the Lidl reached that target in July - six months early!”
Kate Lee, chief executive of CLIC Sargent, said: “The pressure of managing finances causes considerable stress and anxiety during what is an already impossible time for families. This is not right or fair.
“Following the initial shock of diagnosis, treatment often starts immediately and can take place far from home.
“Suddenly families see their lives transform, as their priorities shift to support their child through their illness.
“And as our report reveals, hundreds of families are struggling to keep their heads above water financially and need more help.
“CLIC Sargent will continue be there for as many children and families as we can by providing practical and financial support but more needs to be done to ease this financial burden and help these families cope with the impact of cancer on their lives.
“That is why we are calling on the Government, banks, energy and transport companies to implement a series of measures that will make a real difference to families coping with childhood cancer.”
To sign the petition or donate, click here.