Isla was born with microcephaly; a rare condition where the baby is born with a small head or the head simply stops growing. This means that the brain doesn’t have the chance to develop properly, which leads to further complications. In Isla’s case she was affected by regular severe seizures and recurrent chest infections.

She was referred to Jessie May at the end of 2019, and we quickly got to know her very well. Isla loved cuddles, her giraffe toy and chilling out with lights and music.

Unfortunately at the beginning of 2020, Isla had to spend quite a bit of time in the children’s hospital. As it was the height of the pandemic, things were very stressful for Isla and her family.

Thankfully Isla’s small team of Jessie May nurses were able to continue to visit her in hospital and to provide support visits to Isla’s parents and her siblings. When she was able to be at home we had great fun together.

In a time where social restrictions were still in full force, it made such a difference to be able to put on our PPE and provide the close care and support to children that we were used to – and of course there was always time for cuddles! What a difference it made to our days when Isla gifted us with one of her beautiful smiles.

Despite everyone’s best efforts, Isla became sicker and the decision was made by the family to transfer to the local children’s hospice instead of remaining in hospital. That meant the family could be together and Isla would have the specialist care she needed at the end of her life. Isla’s team of Jessie May nurses continued to support the family at the hospice, so they had faces that they knew well caring for them and holding their hand in the worst time.

Isla died just before her second birthday. It was an honour to care for her during the last year of her life, right up until her last minute. We continue to offer bereavement support to Isla’s family and will do so for up to five years following her death.

When asked if we could share her story, Isla’s mum replied;

“Of course you can, as I don’t know how we would have made it through without the support of Jessie May. It meant the world to have someone who knew us and Isla there.”

The hard times are really hard, but we’re determined to be there and make a difference for the families who need us.