Demelza has a special place in our hearts with the incredible work that they do for children with life limiting illnesses, and their families, including our Henry, who sadly passed away in 2022.

After Henry had his second relapse with Acute Myeloid Leukaemia, he was referred to Demelza so he could access art therapy, which Henry loved especially where it involved crafting! He really enjoyed his sessions but sadly couldn’t participate in many due to so many inpatient admissions. We were touched to be offered to attend the Danson Park fireworks in a dedicated area away from crowds of people where we could protect Henry. This was a very special night in which we were able to do something normal as a family, and allowed us an opportunity to create special precious memories, something that we now hold dear to our hearts.

But it was after Henry's death that Demelza really stands out. Following his death Henry was driven to Demelza Hospice in Eltham to stay in their Butterfly suite; this special room gave us the opportunity to stay close to him as we navigated the first difficult days. From the moment we entered Demelza we felt an overwhelming sense of calm. We were given the opportunity to speak to the bereavement lead, family support lead, the nursing and care teams. Practical support was provided about how to start organising the avalanche of logistical and practical elements that have to be undertaken; others gave us an opportunity to talk, finding out about Henry and us, and crucially provided opportunities to create long lasting memories. Edward has been able to access initial therapy support, so that further help can be provided for him in the future. The teams provided home cooked meals and of course lots of cake!

The care hasn't stopped just because we left Demelza; Edward will be able to access therapy and sibling support. We have the knowledge that someone is at the end of the phone when we need it and that we can access support in the coming months to help us process things. The team at Demelza have been and are incredible and have helped us through some of the hardest days we have ever sadly had to experience, and for that we are truly grateful.

In 2023, I will be cycling on 2 separate challenges: the 100 miles of Ride London in May (a much longer distance compared to what I have cycled so far), and a 4-day adventure cycling from Paris to Demelza Kent, in Sittingbourne. I’ll be aiming to raise some much needed funds for this amazing charity which has done so much for our family, and for supporting so many families in Kent, South East London and East Sussex

Thanks for taking the time to visit my JustGiving page. 

https://www.demelza.org.uk/news/continuing-the-legacy-of-9-year-old-henry 

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