For Nicola Norris and her husband Lee, ellenor has been a lifeline in providing them with a whole range of services to help support and stimulate their six-year-old son, Jensen.
Jensen Norris – a longed-for only child – was born in 2013 with the rare Sturge-Weber and Klippel-Trenaunay syndromes, which have severely limited his development and left him open to distressing symptoms, including seizures and pain. He has been under ellenor’s care since he was 15 months old. “It was our early-start team at Coxheath medical centre that referred us,” remembers his mother, Nicola. “They told us that is was never too soon to start seeking support, and that our local ellenor charity could help with everything from medical care to play therapy.”
Ellenor’s unique mix of practical and emotional support has proved invaluable, and with Jensen now six, his team have become regular visitors to their home in Sutton Valence, near Maidstone.
“We’ve had real continuity of care over the years,” says Nicola. “Support from staff who know us well has ensured we really understand the implications of Jensen’s condition and how to respond to them. Plus, vitally. Jensen just loves Sian, his nurse – he’ll always go straight to her when she’s around– I don’t get a look-in!”
Jensen’s syndromes are rare and require highly specialist care – expertise that can be hard to identify and access. “That’s where ellenor’s problem-solving relationship with us has been so helpful,” says Nicola. ” Sian is always been on hand to help identify Jensen’s needs and to smooth our path towards meeting them – she’s unstoppable! At one point, for instance, it looked as if Jensen might need a higher dose of medication from us at home to control one of his symptoms, but we needed the say-so from his consultant. We thought we’d have to wait, as he was away on holiday – but Sian tracked him down and got a definitive answer from him without delay! For us as a family, ellenor has been so brilliant at getting us answers and securing actions we might not have had the expertise, energy and contacts to secure on our own – and certainly not as quickly.”
The psychological benefits of having an expert team to call on whenever required have also been extremely helpful. “The sense of responsibility I have as Jensen’s mum can at times feel overwhelming,” says Nicola. “Just to be able to pick up the phone to the team at any time and discuss what I’m feeling, to have them listen to my worries, makes all the difference. “
Jensen usually goes to a special school, but in the current circumstances he is at home full time. This has brought additional challenges to the family, especially as Jensen has no spatial awareness, meaning social distancing is not an option. “Lee and I usually work outside the home – I’m based in the admin department at London Bridge Hospital, and initially I was worried that I might have inadvertently brought Covid-19 back from the hospital into our home,” explains Nicola.
“Again, the ellenor team were there to reassure me whenever I needed it, and to explain how we’d handle a crisis if it arose. So far, though, thankfully, we’re all virus-free and are doing everything we can to stay that way.”
With Jensen away from his regular school routine and therefore out of his comfort zone, the priority is to keep him as stimulated and engaged as possible at home. “The ellenor team have come up with plenty of ideas,” says Nicola. “For instance, he received home visits from ellenor’s music therapist, Petra, when he was smaller, responding well to the guitar and cymbals she brought and clearly enjoying the music they made together, so we might try more classes via video link and see how those go down with him.”
Nurse Sian has also said she’s going to try to find some multi-sensory lights and toys for the family’s garden, so they can keep Jensen entertained and enjoy any spring sunshine at one and the same time. “It’s not easy to access the right equipment at the moment –believe me, I’ve tried – but if anyone can track it down for us, it’ll be Sian,” says Nicola. “That’s the thing about working with ellenor – they’ll explore every option; they don’t give up – and nothing’s too much trouble for them. We feel so lucky to have their support.”