After a perfectly routine pregnancy, it was a shock to her parents when Ella was born with missing skin on her foot, knee and left ankle.
Until their daughter Ella’s arrival, Erica and Tom had never heard of Epidermolysis Bullosa (EB). Thankfully, their obstetrician’s prior knowledge of EB ensured her parents were connected with a specialist EB Nurse within an hour of Ella’s birth.
What followed were some of the most overwhelming weeks of Erica and Tom’s lives, but their EB Nurse, Rebecca, took the family under her wing and ensured that Ella was handled safely from day one to protect her fragile skin.
Today, Ella is two years old and thriving. She has recently started walking, loves to play with her older brother Archie, and her communication skills are remarkable for her age. The family have also found an incredibly supportive daycare, allowing Ella to attend just like other children her age.
Throughout this journey, the EB Nurse Program has continued to be an important source of support for the family. The family attend the EB clinic at the hospital every few months, and their EB Nurse still stands as their first point of contact for any issues – from wound concerns, problem-solving, to general medical questions.
Erica shares “Rebecca is one of our biggest and most utilised supports as we continue to navigate the complexities of caring for a child with EB.”
With your help, we can continue this essential work and further expand this program, so that families can receive the care they deserve.
Please give the gift of expert EB care to families this festive season.