Monthly Archives: August 2013

Grief and Love

Unlike previous posts, I thought it best to precis this one with a quick explanation. It is, as the title says, about grief, so may be sad to read but it is also about hope and love. It’s not a cry for help or an attempt to gain sympathy – we have plenty of that from our family and friends – but it is in keeping with the style of this blog so far and is simply a reflection of how I feel. Furthermore, people keep saying to us, nicely, “I don’t know how you feel but…..” Well, I hope that this helps.

Continue reading

Moving Forward with this Blog

When I started this blog I had four loose objectives. The first was to keep family and close friends up to date with Edward’s progress; the second was as a form of personal catharsis which became more and more important as his journey unfolded; the third was, sadly, to keep an account that Edward would be able to look at in years to come to learn how he had fought and overcome such a huge challenge; and the fourth was to provide a reference for other families who will have to travel the same path in the future, and to give them hope and inspiration. Continue reading

Edward’s Funeral – Address & Order of Service

It was a day that none of us wanted, but it was nevertheless beautiful. 350 people turned up at St John Baptist Church in Cirencester to help us celebrate the life of our little boy. We could not have asked for a better day, and we will forever be grateful to all of you who helped us to make it such a lovely occasion, and especially those children who came in fancy dress. There was a moment during the service when all of the children came to the front to light candles next to Edward’s coffin, to the accompaniment of Firework by Katie Perry and Mah Manah by The Muppets. It was simply lovely. Continue reading

Edward’s Funeral: Donations

As always, thank you for all your lovely messages.

Many of you have been asking if you should send flowers or if there is a charity that you can donate to. Clare and I would prefer not to receive flowers and ask that you consider making a donation to a wonderful little charity called Little Hearts Matter, who have been of immense support to us during Edward’s 4 years with us. I have set up a fundraising page (link below) and we would be enormously grateful if whatever you might have spent on flowers could be used to help another child and family affected by Edward’s condition. Thank you.

Funeral Arrangements

Dear friends,

Edward’s funeral will be at 1.30pm on Friday 9th August at the Parish Church of St John the Baptist in Cirencester. It will be a celebration of his life and personality. In view of the amazing support that we have had it will be an open funeral and we welcome anyone who knew him to come and share the occasion with us. There is no specific dress code apart from smart and children are invited to come in fancy dress if they wish as this was one of Ned’s favourite things. It will be a child friendly service and kids will be well looked after.

There will be a private cremation in Cheltenham afterwards, after which we will join everyone else for some refreshments at a venue still to be confirmed.

The church is very easy to find – it is a beautiful and historic building that dominates the Market Place which is right in the heart of town.

Clare, Alice, Arthur and I look forward to seeing you there.