I lost my son to cancer. No parent should face that nightmare without support

In that moment, our world changed forever. Everything that had mattered the day before suddenly became irrelevant. Gym classes. Work meetings. Household jobs. Future plans. All replaced by one overwhelming focus: keeping our son alive.

For the next 10 months, the hospital became our second home. We spent weeks living on wards, sleeping in hospital chairs, travelling hundreds of miles for treatment, learning medical terminology we never wanted to know and watching our son endure chemotherapy, major surgery, radiotherapy and countless procedures.

During those 10 months, I saw something that has stayed with me ever since. The parents. Mums and dads who were no longer living normal lives. Parents surviving on a few hours' sleep. Parents washing in hospital bathrooms before returning to their child's bedside. Parents trying to support siblings at home whilst living in hospital. Parents desperately trying to hold their families together whilst carrying the fear that their child might die.

They were still there every day. Advocating. Questioning. Comforting. Fighting for the best care possible. But many had become shadows of themselves. Emotionally, physically and financially exhausted. And when I looked into it during Hugh’s treatment, we realised something shocking. Whilst there was a system to treat the child, there was almost no system to support the parents.

For 10 months, our lives revolved entirely around Hugh's treatment. Yet despite spending almost a year living through a crisis, there was no automatic financial support, no statutory leave entitlement and no coordinated framework to help us navigate the impact on our family.

When Hugh died in September 2021, aged just six, our lives changed again. In the years that followed, Frances and I founded the charity It's Never You and began speaking to families across the country. We discovered that our experience was far from unique.

The stories were remarkably similar. Parents leaving jobs. Families losing income. Relationships under strain. Mental health deteriorating. Parents carrying trauma long after treatment ended. Parents forced to become carers, nurses, advocates and administrators overnight, all whilst trying to be Mum and Dad.

One father told me he spent more time worrying about how he would pay the bills than he did about himself. Another family nearly lost their home.

Many parents described feeling abandoned by a system that focused, quite rightly, on treating their child, but failed to recognise the devastating impact the illness was having on everyone around them. This is why Hugh's Law exists. Not because families want sympathy.

But because serious childhood illness affects far more than the patient. When a child becomes seriously ill, the whole family enters crisis. The parents are left trying to navigate employment, finances, caring responsibilities, hospital life and overwhelming emotional trauma. That reality is finally beginning to be recognised.

The Government's consultation launching today on carers' rights and support for parents of seriously ill children is a hugely significant moment. Hugh's Law seeks to recognise a simple truth: when a child is diagnosed with a life-threatening illness, parents need practical support, workplace protection and financial security from Day One. No parent should have to choose between being at their child's bedside and keeping their income. No parent should have to worry about losing their home because their child is fighting for their life. And no family should have to navigate the darkest days of their lives without support.

For four years, we have campaigned to make that case. We have taken families' stories to Parliament, worked with MPs from across the political spectrum, met with ministers and challenged policymakers to recognise what thousands of parents already know. When a child becomes seriously ill, the family needs support too.

This consultation is an opportunity to turn those stories into change. For us, Hugh's Law has never been about politics. It has always been about people.

And if Hugh's legacy can help ensure that future families receive the support they need when they need it most, then something positive can come from the unimaginable loss of our little boy. Because no parent should have to face their worst nightmare alone.
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Ceri Menai-Davis is the founder of charity It's Never You and the campaign 'Hugh's Law.'

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