Edgard runs one or two marathons a year, he’s just run the off-road Hampshire Hoppit, but the Bournemouth Marathon is a highlight in his running calendar:
“The atmosphere on the day is amazing. There are thousands of runners and so many people come out to support us. There’s something for everyone too, with all the different races for different age groups.
Last year, Daniel ran the Kids’ Kilometre with his mum holding his hand all the way round, which was amazing for a child with his condition. His sister, Isabella, ran the Junior 2k race and both of them were raising money for Julia’s House. It was a lovely family thing to do.”
Edgard’s son Daniel, 14, has a rare condition called Sanfilippo Syndrome (or mucopolysaccharide III B). It’s a rare degenerative and progressive condition that affects a child’s learning and developmental abilities, although its impact on each child is different. “The progression has been fairly slow for Daniel and he’s still running around and very active. He’s very bright and while non-verbal is very demonstrative and tactile. He’s a very happy boy,” says Edgard.
Julia’s House, the Dorset and Wiltshire children’s hospice, help Edgard’s family by sitting with Daniel at his home for a few hours once or twice a week. “It’s a great help. The carers from Julia’s House will usually take Daniel out and about, either to the park, on a picnic or swimming. It really helps manage time for the family and Daniel’s sisters, so they can have the life experiences they need too. It is a great support for all of us.”
Edgard’s right in the middle of his training programme: “You can never do enough preparation. I’m just working up to 20-21 miles but it still hurts when you go up to 26 miles. The support always keeps you going though. So many people come out on the day and the Julia’s House team are there in force, making a lot of noise, cheering and giving out water.
“While it’s a fairly flat course, I have been doing some hill training for stamina and also cardio and strength work at the gym. This whole body approach has made a real difference to my running. As it’s a road race, I always make sure I’ve got the right shoes to keep me as comfortable as possible.
“I have been trying to get some friends to run with me but haven’t convinced them yet. Although, in a way I actually quite like to run the race solo, so I can enjoy the atmosphere and the personal challenge.”
Edgard has raised thousands of pounds for Julia’s House over the last few Bournemouth Marathons and he’s just about to set up his Just Giving page for this year’s race. “I usually start fund-raising a bit closer to the time. I always put on new pictures of Daniel as it’s a nice way of updating everyone on how he’s getting on. Everyone is always so generous with their support, even though I’ve been asking for donations for a few years now.
“I know the race will come around quickly. I’m hoping it’s going to be one of those bright, warmish autumn days and am just looking forward to it. It’s always such a great event.”
Julia’s House is a local charity dedicated to supporting the families of children with life-limiting or life-threatening conditions in Dorset and Wiltshire. Many of these children require round the clock care, which has a huge impact on family life. Julia’s House relies on public donations, fundraising and legacies for 95 per cent of the money needed to run its vital service.
You can donate to Edgard’s JustGiving page here.