During pregnancy, Gemma experienced complications, including fluid on Millie’s brain and concerns that part of her brain was missing. Doctors suggested it could be Aicardi Syndrome, and Millie was diagnosed at two months old at Great Ormond Street Hospital. “There were so many appointments, tests, physio and occupational therapy – it was just trying to digest the news,” recalls Gemma.

Millie’s family first heard about Little Havens when she was around two. “Whilst it was lovely, we didn’t really pursue it. However, the hospital encouraged us to return, and we loved it,” Gemma explains. The respite stays gave the children a sense of freedom: “They could run around the garden and get their favourite food from the kitchen. The cooks knew the details, like how her sister Ellie loved strawberry ice cream.”

Now nearly 20, Millie enjoys time at home with the Little Havens Community Team. “Sometimes they give her a bath, relax with nice music, play with her, read books, give her a massage, or take her to the garden. It all depends on Millie’s mood.” Care at home also allows the family to manage errands and spend time together. Gemma adds, “The carers have seen all the girls grow up, so they really know our family well.”

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Published in 2025