Henry’s Story

Francesca and Henry’s dad Hua first meet

Our story began at Evelina London Children’s Hospital in 2010, when I became friends with Henry’s dad Hua after we worked together in A&E.

I’ve been Auntie Francesca to Henry and his brother Edward since they were born.

2019 and a devastating diagnosis

We were devastated when Henry was diagnosed with Acute Myeloid Leukaemia in 2019, when he was just 6 years old.

This diagnosis, and the subsequent lockdowns and two relapses lead to us spending time together and a bond that meant Henry, his brother Edward and parents Sam and Hua have become family to me in all but blood.

As soon as I walked through the door I was jumped on by the boys, be it for karate fights, board games or cuddles on the sofa whilst they downloaded and played numerous games on my phone. We came as a trio and Hua, Sam and I were normally left to snatch conversations on the doorstep as I left as it was the only chance we had!

A new insight into what it’s like for a seriously ill child and their family

Henry’s diagnosis and treatment gave me a completely different insight into what life is like for a seriously ill child, and those that love and care for them, to that of being a nurse.

It is a very helpless feeling, seeing those you love going through so much. It became even harder during the pandemic, when they were stripped of so much support, including that of being together as a family, with Hua and Sam only allowed to be with Henry one at a time and Edward not allowed to visit at all.

Not being able to visit Henry in hospital, whilst knowing the intensity of what he was going through and how much that support was needed for all of the family, was incredibly difficult.

Connecting through Pokemon Go in the midst of the pandemic

It is where I am forever grateful for Pokemon Go, which Henry downloaded on my phone and was teaching me before his bone marrow transplant in 2020. It became our connection at a time when physical connection wasn’t allowed.

During his months in hospital and subsequent hospital admissions it gave me a role and a way I could bring something to Henry’s day – Henry was my trainer and I had a way of making a difference – by sending him photos of the Pokemon I caught.

It was not unknown for him and Sam to call me from the hospital only to find me standing in the dark on a street outside Helen & Douglas House hunting for Pokemon after I’d finished work.

Tragically, on the 27th February, Henry, my personal Pokemon trainer and best little buddy, passed away following his almost 3 year battle with Acute Myeloid Leukaemia.

Henry was brave, kind, big hearted and an absolute board game whizz, who showed us all so much love and had a zest and enthusiasm for life that touched everyone he met.

None of our time was taken for granted and we savoured every moment we had together.

The month before he died we were talking at dinner about how we would describe my relationship with them and Henry just said matter of factly ‘You’re family.’

It has been the greatest privilege of my life to be loved by him and love him in return.

And after all, love is a huge part of what CHAT UK is about. It was inspired by seeing the love of the children and families I have cared for as a nurse. It will only be strengthened by my own love for Henry and all he has taught me.

On the other side of loss

When I had the idea for CHAT UK, I could never have imagined that just 4 months before I would be on the other side, experiencing the loss of someone I love so much.

It has made me even more grateful for the support of children’s hospices, after Henry and his family were cared for by Demelza Children’s Hospice in London after he died.

It is therefore with the hugest amount of love that I will be dedicating CHAT UK to Henry.

Henry always wanted to help others, and I know with him by my side throughout this journey we’ll be able to make an even greater difference to seriously ill children and their families all over the U.K.

At the end of last year I asked Henry what he wanted for Christmas. He replied ‘Maybe some lego…and something I can give to people to make them happy.’ That was Henry.