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Meet Ivy – the butterfly beneath the bandages

Supporting Rare Disease Day February 28th

When Ivy was born it was obvious that she was unique. Born without the skin on her left leg , it was very early in Ivy's life that she was diagnosed with Epidermolysis Bullosa (EB), which is often called 'the worst disease you have never heard of.'

EB is a rare, genetic disorder, which causes the 'glue' between skin layers to not develop properly. This means that the skin layers are very fragile, and at the slightest touch can blister and peel. As you can imagine this condition is very painful and affects almost every aspect of Ivy's life. Unfortunately for Ivy, she suffers from the worst form of the condition, in that it affects her skin internally as well.

Children like Ivy are special because EB is so rare, and they are often nicknamed Butterfly Children, due to their fragile skin being compared to the wings of a butterfly.

To manage her condition, Ivy requires regular care, including bathing and bandaging wounds, and strong medication to help with the pain. Without a regular skin barrier to protect Ivy from infection, her care procedures are highly specialised. Through Little Heroes Care we provide an in-home nurse to visit Ivy’s family and to assist with the difficult care process, which can take up to three hours at a time.

Ivy’s full time carer is her mum, Hannah, who does everything in her power to keep Ivy’s everyday life as regular as possible. The Little Heroes Care in-home nurse program helps Hannah maintain this routine while giving her and her husband some much needed respite.

Even though there is no cure for EB and Ivy will need care support for the rest of her life, beneath the bandages she is a fighter in almost every sense of the word.

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