Children’s Hospice Week is run by our charity partner, Together for Short Lives, and is very close to our hearts. Families caring for a seriously ill child are pushed to their limits – caring around the clock can leave them feeling exhausted and alone. Our children’s hospices must never be pushed to theirs.
With the numbers of children with life-limiting conditions rising, children’s hospices need our support to ensure they can help as many families as possible. Families like Elijah and his mum Natasha…
“It’s nice to go somewhere where you don’t have to worry about fitting in.”
For Natasha and her two-year-old son, Elijah, going for ‘normal’ trips out as a family could be a challenge even before Covid-19 hit. He is unable to walk, talk or see and even simple things like going to the play park just don’t work, they’re not accessible enough and it all just becomes too stressful.
Not like their local children’s hospice, Little Havens, which Natasha calls their “safe haven”. She says “Everything is just tailor made for kids like Elijah – the sensory room, hoists, bath, gardens. It’s nice to go somewhere where you don’t have to worry about fitting in.”
‘We knew straight away something was wrong’
Even before birth, it was not a straightforward journey for the family.
Natasha says, “We knew from the 28 week scan that Elijah had too much fluid in his brain, but we never had the chance to investigate further as I went into pre-term labour on the day they were due to start tests. Elijah was born four days later. His skin was so damaged, we knew straight away something was wrong.”
Just hours after his premature birth the doctors and dermatologists diagnosed Elijah with a rare virus infection called Congenital HSV. This has caused a number of other complex conditions which affect Elijah’s brain and development.
‘Tailor-made for children like Elijah’
When Elijah started getting infantile spasms at five-months-old, hospital visits and an array of medical equipment became a mainstay in their lives. They needed support and the right environment for Elijah to flourish. And that’s when their local children’s hospice came in.
“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” says Natasha. “The hospice is just beautiful and everything is tailor-made for children with disabilities and life-limiting conditions. We especially love the pool. It’s our favourite part. Elijah has issues regulating his temperature and is always cold so needs a pool that is consistently warm.”
Losing that new-found freedom
Suddenly though, all those new experiences and sense of space and freedom came to a halt for Natasha and her baby boy. When Covid took hold, Natasha and Elijah needed to shield at her parents’ house, confined to just one room for 12 weeks to minimise the risk of them catching the infection.
‘Helping us get the best out of life’
Moving into their own house over Christmas, Natasha and Elijah are now back receiving that all-important children’s hospice support from Little Havens: “The people at Little Havens understand Elijah’s needs, they’re enthusiastic at helping us get the best out of his life, and everything is tailored to allow us to do that.”