Having ellenor by my side gives me a voice

Three year old Bradley has been under the care of ellenor since he was six weeks old. His mother, Ella, recalls that she had a straightforward pregnancy but, when he was born, Bradley wasn’t breathing. In fact, it was 45 minutes until he took his first breath.

Bradley spent his first six weeks between two hospitals, spending time in a cool jacket to prevent further brain damage. It took him a week to open his eyes for the first time and three weeks before he made his first sound – although Ella says he’s made up for it since then... He started experiencing seizures almost immediately after birth and has suffered brain damage, which Ella says affects every part of him, including all four limbs.

“We were introduced to the ellenor team just before Bradley was due to be discharged from hospital and, shortly after we got home, two of the team popped in,” says Ella. “I must admit though that, initially, we felt determined that we didn’t need support and, during that first year, we tried to struggle on by ourselves as much as we could.”

However, Ella admits that, over time, ellenor’s support has become invaluable.

“Sometimes it’s hard to get answers when you’re in hospital and ellenor nurses will fight my corner for me – determining what’s happening and securing any key appointments Bradley needs,” she says.

Ella says that, because Bradley’s case is complex, visiting a GP usually results in him being referred to hospital. However, sometimes Ella feels she’s taken Bradley into hospital, when perhaps it wasn’t needed and, other times, she says that the hospital will ask why she hadn’t brought him in earlier.

“It’s tricky and sometimes this makes me doubt myself but the ellenor team are there to support me, pick me up again and make me feel more confident in making the right decisions for Bradley.”

Ella says she’s also called ellenor’s out-of-hours service a few times – when Bradley’s nasogastric tube has come out or when he’s been ‘really poorly’ and she hasn’t been sure what to do. At other times, when Bradley has been admitted to hospital, ellenor nurses have come out to sit with him, giving Ella a much needed break.

She remembers that Bradley was particularly unwell with a virus between Christmas 2015 and February 2016.

“He was losing weight and sleeping all the time,” says Ella. “Our ellenor nurse chased for test results for us and made sure he got the treatment he needed. That support was so helpful.”

Since he was six months old, Bradley has attended ellenor’s Friday Fun Club at Dartford for three hours each week.

“He took a little time to settle but now he loves it,” says Ella. “He’s a lot more confident and he recognises everyone.”

This gives Ella some important time to herself. Sometimes – because she works two nights a week – she simply goes back to bed, while other times she takes herself off for a run and says that exercise has really helped her to keep well and positive during difficult times.

Ella says though that she has also benefited recently from a course of counselling sessions offered by ellenor.

“It was really useful and helped me through a difficult personal patch,” she explains. “I’ve also been offered some other treatments, such as massages, which I really hope to enjoy when I’ve got a little more time.”

Ella feels confident that Bradley is being well looked after at Friday Fun Club – where the respite nurses know about his condition and he also benefits from sensory play and spending time with other children. He has also come along to ellenor’s Christmas and Easter parties and been taken on day trips – one with Ella as well and one by himself.

Bradley has also benefited from music therapy at ellenor.

“His hearing is very good and he really enjoys listening to the different sounds,” says Ella. “Petra [ellenor’s music therapist] told me recently that she made some sounds and he made the sounds back to her – which was lovely to hear.”

Ella adds that, with ellenor’s help, she has become more confident dealing with the issues having a seriously ill child has thrown at her.

“Having ellenor by my side gives me a voice – they help me to be heard,” she explains.