Most of the ladies taking part in this year’s Moonlight Memory Walk in Falmouth will be walking in memory of someone special to them. By raising sponsorship for the Precious Lives Appeal they will also be helping create something special for the future – a children’s hospice in Cornwall to support local families with life-limited children.

One such mum Louise Julyan, from Tregony, visits Little Bridge House, Children’s Hospice South West’s hospice in Barnstaple, with her sons Jake (13) and Toby (8). Jake has cerebral palsy and an aneurism on his brain which means he is not expected to reach adulthood. Louise says: “I was pregnant with twins and at twenty-two weeks went in for a routine antenatal appointment, but was kept in as I had pre-eclampsia. Five weeks later, at just twenty-seven weeks, on Christmas Eve 1996 Jake and Ben were born by caesarean section and taken into intensive care. Jake weighed one pound seven ounces, he was so small I could scoop him up with my hand.”

Ben was slightly bigger at 2lb 2oz but tragically died at just nineteen days old. Louise continues: “We didn’t really grieve properly at the time as we were so worried about Jake. It wasn’t until Jake came out of hospital at seventeen weeks that we found time to grieve for Ben.

“At that time we knew Jake had an aneurism on his brain and some brain damage but we didn’t know to what extent. It was devastating. You don’t think when you’re pregnant that you’re not going to have a healthy child; you think everything is going to be fine.

“Jake was on oxygen when he came home and we were told not to forget that he was three months premature so would be three months behind reaching milestones. When the milestones weren’t happening at all – he wasn’t holding his rattle like other children, he wasn’t rolling over, sitting up, or starting to talk – we started to ask questions. Nobody had actually said to us that he had cerebral palsy, it wasn’t until we went to Great Ormond Street Hospital to see a neurosurgeon about his aneurism when he was eighteen months old that they talked to us about it as if we knew. It was obvious there was something wrong but we hadn’t been given a name for it up until that point.”

The family started visiting Little Bridge House eighteen months ago when Louise learned more about the hospice and the help they could offer from a nurse who used to work there. Louise continues “I don’t know what I expected Little Bridge House to look like; a bit more clinical looking perhaps, but it’s not, it’s very homely. That first visit we spent time in the craft room, I treated myself with a trip to the shops, and Jake was in his element in the Jacuzzi as he loves water. Toby made friends with a girl who was a sibling of another child staying there and they were inseparable.

“It’s lovely to be able to chat to other people who are in a similar situation, and nice to be pampered and cooked for. It’s like a big family when you’re up there and the staff are so nice – they are made from a different mould I think. Nothing is rushed; it is very laid back and relaxed.

“I’d be shattered if we couldn’t go to Little Bridge House for respite. Jake is ventilated at night and it is quite often beeping so I’m up and down the stairs. It’s nice to have a full night’s sleep and know that Jake is being cared for by someone you trust.

“The one to one care is brilliant. It’s like the five star treatment of care – you couldn’t get better. There’s lots of stimulation for Jake, lots of music which he loves, and of course his most favourite thing the Jacuzzi.” With the dedicated sibling team, there is lots to keep Toby occupied too. Louise continues: “The sibling workers are lovely – nothing is ever too much for them. The minute we walk in Toby asks to go to the soft play area. He loves everything about the place.

“It takes us about two to two and a half hours to get to Little Bridge House, but it’s worth the journey to get there. If there is an emergency or a child is at the end of life it would be difficult which is why having Little Harbour closer to home would be a huge benefit.”

Ladies, you can help mothers like Louise and children like Jake and Toby, by helping to build the new children’s hospice Little Harbour in Cornwall. Join Children’s Hospice South West for the sponsored Moonlight Memory Walk in Falmouth on Saturday 18th September.

The Moonlight Memory Walk is a five mile ladies only sponsored walk around Falmouth to raise vital funds for the Precious Lives Appeal and celebrate precious memories with every step. Find out more and register online now at www.chsw.org.uk or phone 01872 261166 to request an information leaflet and registration form.