Emma’s pregnancy with Connie was “a dream,” and the early checks suggested everything was fine, but a photo of her at home in a babygro made her parents realise something wasn’t quite right. Her mum Emma felt a sudden sadness, she said, “I realised it was because she was lying so still – she wasn’t moving as I expected her to.”

After seeking private advice, they were eventually told Connie had spinal muscular atrophy (SMA). The consultant explained there was no medicine, there was no cure and that Connie would continue to decline. “I vividly recall calmly thinking that there is no way I’m losing her,” Emma remembers.

At just nine weeks old, Connie received a new spinal injection treatment. “After that first injection, she lifted her arm up. It was incredible.” Later, a clinical trial changed everything. Connie began to talk, could hold her head upright and steadily gained muscle strength.

Even so, Emma admits the early days were incredibly hard. “We were in a very dark place. I was grieving for the life I thought Connie would have. I still have the odd day when I feel sad, but those moments are rare now.”

When they were first referred to Little Havens, Emma resisted the idea. She said, “I said no thank you – I don’t want to go there.” But visiting Little Havens changed everything. “It was nothing like I thought it would be. From that moment, Connie loved it so much she even said she wished she could live here!”

Today, Little Havens has become like family. The team know Connie well. “One time, I walked in to find her and a nurse playing the Frog Olympics.”

Their first weekend of respite since Connie was born made a huge difference for her parents, too. “Tim and I sat down and watched two films right through. It might sound small, but it meant the world.”

“You find your people here. There’s no pity, no sympathy – just acceptance. People see Connie for the bright little girl she is. It’s not just respite – it’s learning that happiness is possible, even with a life-limiting condition. I’m so glad we gave it a chance”