Story

When Henry was diagnosed with Acute Myeloid Leukaemia for a third time, it was Francesca who suggested that we could be referred to our local children's hospice for support. Following the referral Henry was able to access art therapy, although sadly he wasn't able to have many sessions as he was unwell and in and out of hospital so much. As a family we were able to attend the Danson Park fireworks in a 'safe' way, the boys declaring it was the best night ever. Being able to do something so 'normal' as a family enabled us to make precious memories that we hold dear now.

But it was after Henry died that Demelza really stands out for us.  Henry stayed in their butterfly suite, giving us the opportunity to stay close by as we navigated the first few days after his death. The team there supporting us as we started dealing with the avalanche of paperwork that occurs when your child dies, making phone calls on our behalf, ensuring we had homecooked meals, cake and cups of tea, and enabling Edward to access some initial therapy support. Crucially it also meant that we were able to create some long lasting memories that are so special and mean so much to us.

The care for Edward, and for us as a family continues now and for as long as we want and need it too.  As a family we now know just how important a children's hospice can be to a seriously ill child and their family. This is why we want to support Auntie Francesca (as she is known to Henry and Edward) in her incredible challenge, as she cycles 3200 miles to all 54 children's hospices in the UK. Along the way raising awareness of why children's hospices are so important, the challenges that they face to keep going, all whilst raising vital funds so they can keep supporting families who need them.

If circumstances had been different, we have no doubt that Henry would have been part of this incredible challenge. To be honest he would have been cycling alongside his Auntie Francesca, who he loved so very much, making sure that she was ok and of course wanting to make sure that her Pokemon training was going to plan. Henry will be with Auntie Francesca, just like he is with us every day, shining down and looking out for her and giving her that extra push whenever the going gets tough.

Challenge 

Hua has committed to cycling a total of 320 miles during the challenge, with a vast amount of the miles happening during the Team Henry and Team Edward weeks.

Edward has stated that he wants to complete 20 miles, by scooting, running, walking etc. over the two weeks (probably with Sam trying to catch up with him!) 

Please donate what you can to support this incredible challenge and help seriously ill children and their families across the UK. 

Together we can make a difference.

Together for Short Lives and CHAT UK

When a child’s life is expected to be short, there’s no time to waste. Together for Short Lives is the UK charity that is here to make sure the 99,000 seriously ill children and their families can make the most of every moment they have together – whether that’s for years, months or only hours. Many of these children have complex conditions and need specialist care 24 hours a day, seven days a week. Our ‘to do’ list is growing daily, and we have one bold ambition: To reach every family caring for a seriously ill child who needs help.

CHAT UK (Children’s Hospices Across The UK) is the innovative vision of children’s nurse Francesca Lennon to raise money and awareness for children’s hospices nationally. Her first major project will see her cycling to all 54 children’s hospice services in the UK this summer.

Starting on 20th June, nurse Francesca will incredibly be cycling 3,200 miles over 70 days to complete the marathon challenge by 28th. August, an average of 46 miles per day. She has already started and is already smashing it!