Children’s Hospice Week – Natasha and Elijah ‘Push to the Limits’ to support hospice care

A family supported by local hospice care are doing their bit to support the charity this Children’s Hospice Week, as it’s been ‘Pushed to the limits’ by the pandemic.

Natasha Oakley’s son, Elijah, is cared for by Little Havens, both at the hospice in Thundersley and in their Grays home. Elijah, 2, was diagnosed just hours after his premature birth at 31 weeks with a rare virus infection called Congenital HSV.  This has caused a number of other complex conditions which affect Elijah’s brain and development, meaning he is unable to walk, talk or see, but responds very well to the sense of touch and sound.

When Elijah started having seizures, it was suggested Natasha seek more help and made a referral to Little Havens. The 31 year old former teacher says, “I was quite happy to consider Little Havens. I’ve always known Elijah was life-limited and he was likely to not live into adulthood. I’ll always take what support is offered if it’s of benefit to Elijah and myself.

Everything is just tailor made for kids like Elijah –  the pool, sensory room, hoists, bath, gardens. It’s nice to go somewhere where you don’t have to worry about fitting in. It’s very difficult for us to go anywhere that is accessible and fun for him.”

Elijah and Natasha recently had their first overnight stay. “It couldn’t have been timed better following Elijah’s first PICU (Paediatric Intensive Care Unit) admission. We were both exhausted and really benefited from the opportunity to relax and for me to just enjoy being Elijah’s mum. It allowed me to stop and enjoy Elijah and see just how much he is capable of.”

The couple shielded during the pandemic because of Elijah’s reduced immune system, but are now supported in their own home by Little Havens. “I still need to stay at home during these respite visits because of Elijah’s emergency medication. We absolutely love having our carer Amanda come over and get to know Elijah, what his little oddities are and what makes him happy. She comes in with more energy, new ideas of things to do with him.”

Natasha will be joining in the charity’s ‘Challenge 46’ to raise money for the hospice with a range of activities, as the theme is ‘Pushed to the limits.’ Even Elijah will take part, doing 46 repetitions of his physio exercises. “I can see how children’s hospices have been pushed to their limits with fundraising, with all these different activities like the London Marathon forced to cancel. Yet hospices are still expected to provide same level of care without the same level of funds coming in. They’re literally pushed to their limits.”

Challenge 46 is free to sign up, and the charity is asking participants to collectively raise £46,000 – enough to fund a week of care at Little Havens. People can walk, run, cycle or take on their own unique challenge around the number ’46.’

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Published 15th June 2021

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Elijah and Music Therapist Ruth