06/02/2026
Today we returned to Great Ormond Street Hospital to donate a book of children’s NG tapes, along with toiletry bags filled with everyday essentials.
By chance and perfectly timed it’s actually Feeding Tube Awareness Week. It felt especially meaningful to deliver a book of beautifully printed tapes for children to choose from. Something small but powerful that gives a child a sense of choice and control of their own decision making through their treatment which is so important. Claire from the play team, someone Florentina absolutely adored during her time at GOSH had reached out and asked if we would consider supplying tapes for the oncology wards. Of course I jumped at the opportunity and didn’t hesitate to say yes.
Having walked this journey myself with Florentina, through countless NG and NJ tube insertions I know just how important that small moment of control can be for a child. Tube placement is hard. It can be frightening and traumatic. Being able to choose a decorative tape can make all the difference to a child in that moment.
Alongside this we donated 20 toiletry bags, each packed with essentials. I remember all too well the days we would go in “just for scans,” only for Florentina to spike a temperature and suddenly we were facing a minimum 48 hour stay. Being caught without toiletries adds another layer of stress to an already overwhelming situation. Receiving a bag like this would have meant so much in those moments.
Returning to GOSH was emotional. It was my first time back since we walked OUT of those doors in September 2024, heading home on palliative care. But being there now continuing Florentina’s legacy, turning our experience into something that helps other families fills me with an indescribable pride.
Her light is still reaching others and that means everything 🩷🩵🦋
