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.
Mum, Natasha, remembers “his main condition of HSV is incredibly rare. One in 300,000 are born with it and has a high morbidity rate. Most children don’t survive. The doctors didn’t tell me much, Googling was depressing, so I decided that he’s here, he’s breathing on his own, we’ll just go with it and deal with what we can.”
‘Tailormade 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.”
Natasha and Elijah also visited the hospice for ‘day stays’ and a Sensory Storytime session. “Elijah responds really well to tactile activities, the sense of touch and being talked to. He does enjoy music, but much more through the interaction with another person.”
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.
Natasha recognises “Covid has meant that parents like myself have been pushed to our limits. We haven’t been able to have proper respite or that safe haven to go to. I’m looking forward to getting back to Little Havens which allows me to relax, even if it’s just for a couple of hours.”
‘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, and Natasha is passionate about others getting the same opportunity:
“It’s so important that parents of life-limited children – and the wider community – understand what children’s hospices do and how much they benefit these children who, a lot of the time, are scraping up the little bits of help the NHS is able to give them in term of therapies. 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.”
There are no limits to what Little Havens children’s hospice will do for families like Elijah’s.
But right now, hospices like Little Havens are being pushed to their limits. More and more families need their help – and that’s why we need you to push yourself to your limits by fundraising or making a donation directly today.
Will you push yourself to your limits, so children’s hospices aren’t pushed to theirs? #ChildrensHospiceWeek