‘We lost time with Joseph while fundraising for cancer vaccine’

How do I begin to explain the impact that a fundraising campaign to save your child’s life has on you and every single person around you?

The fear, the desperation, the willingness to do anything to gain support for your child, the humiliation of publicly begging for money, the stress and panic that you may not reach your target, and the anxiety that comes with putting your vulnerable family out there on a public platform for all to see is just the tip of the iceberg.

And just like an iceberg, those emotions and all those fears run much deeper than you dare to even acknowledge to yourself.

When your child is diagnosed with a rare and aggressive form of cancer, your life around you and everything else is put on hold and replaced with gut-wrenching statistics, blood tests, biopsies, toxic chemotherapy, surgery, MRI/CT scans and fear. Unimaginable fear.

To then be faced with the realisation that you would need to raise £350,000 for a vaccine to try to save his life is a feeling that no words will ever describe.

How do you run a fundraising campaign from your child’s hospital bedside?

Sadly, this is the reality for hundreds of families currently in the UK.

Joseph’s fundraising campaign was an incredible one. It saw our community come together and wrap its arms around our family, it saw thousands of people reaching out and setting up fundraisers for Joseph, and we saw and felt the most incredible amount of love and support, which really did help us so much.

However, the campaign was also the most horrific and stressful nine months of our lives.

We lost precious time with Joseph because we were out on the streets, fundraising and raising awareness. Even when we were with him, conversations were taken over by the campaign.

We had no quality time with our family, when we needed it more than ever, and it had a huge impact on the other children in our family.

We worked up to 18hour days, sometimes more, answering messages, thanking people, designing, and distributing leaflets, writing social media posts, and attending and setting up events.

The fundraising campaign had a devastating impact on my entire family’s mental health.

Some days, we feel so angry. Why couldn’t we have spent the last year of Joseph’s life making memories and spending precious time together, instead of standing in streets with collection buckets?

Oh, how we crave one more afternoon running around the garden playing war machine from the Avengers, to have one more cuddle or to enjoy one more circle dance.

We will never get over the fact that we lost so much time with Joseph. Never.

Whilst we don’t regret the decision to fundraise, because we had to do everything in our power to save his life, the pain of knowing how much time we lost due to that fundraising is excruciating.

But we channel that pain, that devastating experience, into Joseph’s Smile, his legacy charity which will one day take the burden of a fundraising campaign off every family who is fundraising for their child’s treatment in the UK.

We may have lost time with our sweet boy, but we will do everything in our power to make sure that we give other families that precious gift of time.

We can do this, we will do this, and we will do it for Joseph.

– Emma Rees is Joseph’s aunt