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It feels like we’re one big team – us and ellenor

Blog post   •   Sep 23, 2016 08:41 BST

Five-year-old Harry Woodgate lives in Northfleet with his Mum, Samantha, his Dad, Dean and his older sister Rhianne, aged ten.

Samantha says she had a ‘text book’ pregnancy with Harry and her scans didn’t indicate anything untoward. However, the family knew that Harry had problems just ten minutes after he was born - when he had a seizure and stopped breathing.

Harry was born during an evening and, by the next morning, he had been sedated and moved to another local hospital. He continued having seizures though and was soon transferred to a children’s hospital in London. Samantha ended up staying in the capital with Harry for six months and, during that time, the family realised that his condition was long-term and life-threatening.

Five years down the line, Harry still doesn’t have a diagnosis as such, but he continues to suffer from ongoing seizures, has epilepsy, microcephaly, delays in development and is registered blind, as well as being tube fed.

“Finding out he was ill was such a shock. Our life changed just like that and everything turned upside down,” says Samantha. “If he received a diagnosis now it wouldn’t really make a difference though – he’s still our Harry.”

While in hospital in London, Dean and Samantha were told about the support which ellenor could give them and how the charity could help them to look after Harry at home. Soon after, one of the ellenor nurses travelled up to London to meet the family.

“I remember feeling apprehensive when they mentioned the word ‘hospice’,” says Dean. “But we very soon appreciated that ellenor means so much more than that.”

The first time that the family came home was Christmas Eve and a nurse from ellenor popped round. They only managed three days before returning to hospital but, eventually, the family came home to Northfleet for good. From then on, ellenor nurse, Debbie Carroll, visited the family regularly and the charity gave the family access to 24/7 support.

“We really appreciate ellenor’s on-call service and we use it quite a lot – sometimes in the middle of the night,” says Dean. “We call them about a variety of things, including Harry’s medication and when he has a seizure. They’ve even called an ambulance for us on one occasion.”

Adds Samantha: “When Harry has a seizure, we try to keep him at home as long as possible. With the support of ellenor, we can generally achieve that.”

Sometimes Harry does have to go to hospital though.

“If that’s the case then Debbie calls ahead and lets them know to expect Harry,” says Dean. “This is really helpful, as it gives us one less thing to worry about, as going to hospital with Harry involves quite a lot of organising and packing.”

Adds Samantha: “Without ellenor by our side, Harry would be in hospital nearly all the time and we simply wouldn’t cope. It feels like we’re one big team – us and ellenor. We don’t feel like we’re making decisions alone; we make decisions between us. If we feel we want to keep Harry at home they help us to decide if that’s the right decision.”

Harry attends school in New Ash Green and ellenor nurse, Debbie, keeps in touch with the school as well, creating a continuity of care for Harry.

“Debbie goes to meetings at school with us and other meetings concerning Harry’s care as well,” says Samantha. “It means we are all on the same page.”

The family enjoys the family get-togethers which ellenor organises, such as drop-ins, the annual Family Fun Day and parties.

“Meeting other ellenor families is really lovely,” says Samantha. “It helps us to realise that we’re not alone, we’re all in the same boat. It’s also great that Rhianne gets included as well.”

The family was absolutely delighted to be chosen as one of the two ellenor families invited by the Rotary Club of Medway to visit Disneyland Paris in May. Rotary not only paid for the family to attend, but also covered the costs for two members of the ellenor children’s team to go along as well, as support for the two families.

“It was an absolutely fantastic break,” says Samantha. “We’ve never been away abroad as a family and we couldn’t have done it without Rotary’s generosity and the care of the ellenor team members who came along.”

The family went with another ellenor family whose daughter, Freya, is an oncology patient. Rhianne and Freya hit it off immediately – and there were tears at the end of the break when it was time to go home. The two families have since met up at Bluewater for a meal and hope to catch up again soon.

“To be honest, I shed a few tears when it was time to leave as well,” says Samantha. “It was an incredible holiday and we made so many memories. We didn’t have to think about anything, they did everything for us. Dean and I even went into Paris with the other parents for a day, knowing that Harry and Rhianne were being looked after.”

She adds: “The ellenor team were so helpful with Harry while we were in France. They had a plan for him and had it translated into French, in case of any problems, and knew exactly when he needed his next medication. It was such a lovely opportunity for us to relax as a family. Harry was able to go on lots of rides at Disneyland Paris and, if we couldn’t get his wheelchair on a ride, we’d carry him on.”

“We get so much support from ellenor, they’ve done so much for Harry,” says Dean. “Debbie is great at keeping in touch with us. If Harry has a bad day, she always calls the following day to check up on us or, if he’s been admitted to hospital, she’ll pop in. We really appreciate her help liaising with doctors and other medical people on our behalf.”

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