At just a few week’s old, little Gracie was diagnosed with focal epilepsy, chromosome duplication and visual impairment. Now six, Gracie is fully dependant for all her care needs and mobility, and she can suffer from multiple seizures during the day which need constant monitoring and reassurance. This life limiting condition means that Gracie is unlikely to reach adulthood.
With 2 older sisters, and a brother, Gracie’s house is a busy one. This means that Mum, Kayley, can very quickly find herself feeling overwhelmed. In Dec 2016, when she was just a year old, Mum self-referred Gracie to Jessie May. In the beginning Kayley found it a little difficult to step back, having grown so used to managing everything herself. However, over time her confidence in Jessie May grew as she started to see the positive impact that the Jessie May nurses were having on Gracie. Kayley was able to leave Gracie and use the time that was opened up to do things she couldn’t before;
“It was lovely to have this free time to spend with Gracie’s brother and sisters, or even go out and spend overdue time with my friends, knowing that Gracie was in the best hands.”
As the visits increased, so did the types of activities Gracie was able to take part in. Her Jessie May nurses would take her out for a walk and get some fresh air, they would attend soft play sessions at their local indoor playground, and even have picnics at the park.
However, in March 2020 everything changed in an instance when the whole of the UK were gripped in the midst of a global pandemic.
With school’s closing, the entire family now found themselves confined to the house 24/7 for the first time ever. Kayley had to juggle ensuring Gracie’s medical needs were taken care of, with home schooling her other children. Gracie’s sisters and brother couldn’t access available school places as the whole family needed to self-isolate for Gracie’s protection.
Jessie May were able to offer phone and text support during the first lockdown, which gradually increased to some doorstep visits – giving Mum a chance to talk about how she was feeling and offer a friendly face.
As we adjusted our working in line with changing guidelines, this increased to visits back within the home, with Jessie May nurses in full PPE. Gracie had frequent admissions to hospital over the winter and is still unable to return to school due to her medical needs. So, Jessie May nurses are visiting twice a month until she can return to school. The visits are giving Kayley the time she needs to focus on Gracie’s siblings without feeling completely overwhelmed.
“[Without Jessie May], I would feel very lost and alone. Jessie May have helped me with everything from incontinence pads to school meetings. Thank you to everyone who supports Jessie May, you’re helping to support a team of people who bring us sunshine on a rainy day. It’s not just about respite – it’s about not having to face my child’s suffering alone.”