Axel was born just before Christmas in 2021and from the outset, Axel’s journey was marked by unexpected challenges.

During pregnancy, scans revealed clubfoot, and the situation escalated during labour when Jenni, his mum, required an emergency C-section. Immediately after birth, Axel was admitted to the Neonatal Intensive Care Unit.

Within two weeks, Axel was diagnosed with Congenital Myotonic Dystrophy, a genetic condition inherited from Jenni, though his siblings are unaffected.

Axel spent nine weeks in hospital, as he wasn’t strong enough to breathe or feed alone. But coming home was daunting. ‘I couldn’t relax; I was terrified of everything Axel was going through,’ she says.

A few months later, the family was referred to Little Havens by Community Nurses as Jenni didn’t know where to turn for support. “We didn’t know what to expect; I was terrified to come. But once we came, all the kids loved it here. It felt like a home from home. Which is why we’re here all the time!”

The family attends day stays, Stay and Plays, and Sensory Storytime, while Axel’s siblings enjoy cinema nights and other activities. Axel loves rolling up and down corridors in his wheelchair and using the accessible playground—experiences unavailable at home. Jenni has also accessed counselling at Little Havens, helping her come to terms with the future.

‘Little Havens is not what people expect it to be. The word hospice makes it sound scary and sad, but it’s the opposite; everyone is smiling, and parents are relaxed. And you get fed—you don’t have to cook!’ Jenni adds.

For the Barrett family, Little Havens has become a place of support, joy, and community, offering Axel and his family the care and comfort they need.

To find out more about how you or someone you know would benefit from the care at Little Havens, click here. 

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Published in 2025