Shortly after she was born, Deanna Pope’s family began to realise she and her siblings would blister easily around their legs and feet. After seeing a specialist, Deanna, alongside other members of her family, were diagnosed with Epidermolysis Bullosa (EB Simplex). This was when Deanna first heard about DEBRA Australia.
Now a mum herself, three of Deanna’s children also live with EB. Despite their daily struggles living with this often debilitating condition, they haven’t let it stop them from playing the sports they love and achieving success. They have learnt to become resilient in the face of this adversity and are determined to not be defined by the condition.
In 2022, Deanna and her family faced the tragic loss of her brother Darryn to Covid-19. Darryn had also lived with EB and an acquired brain injury due to a devastating car accident. Prior to this accident, Darryn was known for his generosity and larger-than-life personality. As part of his legacy, the 2024 “Darryn Pope Dad’s Break Away” was launched, generously supported by the Pope family, and providing much-needed respite for dads of children with EB.
As a passionate member of the Melbourne horse racing community, Deanna has also spearheaded the inception of a new Ladies Luncheon fundraiser event for DEBRA Australia, Bubbles and Butterflies, October 2024, helping to raise vital funds to further support our EB community. Despite the challenges living with EB has presented throughout her life, Deanna is committed to giving back and empowering people living with EB to live life to the fullest, for since the loss of her beloved brother Darryn she “now has two lives to live”.