A BURNTWOOD dad has launched a new organisation to support families with children undergoing cancer treatment.
Tom Down decided to launch Side by Side Childhood Cancer Foundation after seeing his two-year-old son Maximus diagnosed with rhabdomyosarcoma – a rare childhood cancer that affects around 100 children and young people each year in the UK.
He said that while the emotional toll facing families was high, he soon realised the financial challenges treatment can bring were all too real.
But now Tom hopes the new organisation can help those facing similar situations.
Tom said:
"The diagnosis brought every emotion you could imagine, but above all else, it brought shock.
"I spent days walking the halls of the hospital in a daze, trying to process what was happening to our little boy.
"Then reality hit – despite everything Max was facing, I still had to go back to work. The mortgage still needed paying. The bills still arrived. Food still had to go on the table. On top of that, my partner’s car broke down and needed repairing.
"The world had kept turning, even though ours had come to a standstill.
"Our costs also increased overnight. We were making regular trips to Birmingham Children’s Hospital, paying for fuel, parking, food, drinks and making changes at home to help care for Maximus, all while trying to give him as much love and normality as possible.
"We’re incredibly fortunate. My employer has chosen to continue paying my salary for three months so I can be with my family while we adjust to our new normal. They don’t have to do that."
Tom said he was "stunned" to discover how little help was available for working families while their children are undergoing treatment.
He explained:
"Our son is entitled to Disability Living Allowance, but there’s a significant backlog before claims are processed.
"Even once awarded, it’s around £114 a week, but during one recent hospital stay, we spent eight days on the oncology ward, so £114 wouldn’t even begin to cover the additional costs that families face.
"We’re surrounded by incredible family and friends who have supported us every step of the way, but not everyone has that.
"I saw a father sitting beside his daughter on the oncology ward. He was still wearing a hi-vis vest. I remember thinking that before he could sit there holding her hand, he’d probably had to finish a shift at work first.
"No parent should ever have to choose between earning a wage and being beside their child during the hardest moments of their life.
"That moment became the reason for Side By Side."
Tom is hoping that Side by Side will see people pledge £10 a month – meaning 500 pledges could allow five families every month to receive a £1,000 grant to help with living costs and give parents the chance to "spend more time where they're needed most".
He said:
"We’ve submitted our application to become a registered charity, but Charity Commission approval takes time – and the families who need help don’t have that time.
"So instead of waiting, I launched a JustGiving campaign as an individual. Within the first 24 hours, almost £2,500 had been donated. That response gave me hope that people do care – they just need to know the reality that families are facing.
"I think many people, like me, assume there must already be support available for working parents in this situation. I certainly did.
"Sadly, there isn’t enough.
"Once Side By Side is fully established as a charity, I hope long-term support from businesses, corporate partners and regular donors will allow us to help families across the UK for many years to come.
"I sincerely hope nobody ever needs Side By Side and our paths never have to cross, but if a family hears the words 'your child has cancer', I want them to know that Side by Side plans to be there."
People can donate via an online fundraising page.
