Our families

Epidermolysis Bullosa (EB) is a rare skin condition affecting around 5,000 people in the UK. People with EB have extremely fragile skin which can tear and blister at the slightest touch. There are many variants, and one-year-old James has the most severe form of the condition.

Following a devastating diagnosis during pregnancy, parents Helen and Ben didn’t think they’d get more than a few hours with their baby. But Orla came out fighting and the family spent three days together, making precious memories they’ll never forget.

Up until the age of seven, George was living a life like any other healthy child. But one day everything changed for him and his family.

Michele’s three-year-old son, Marcus, has had respiratory problems since birth and a tracheostomy helps him to breath. But when it came to using a hospice for support, Michele was reluctant – until she realised how invaluable Hospice at Home care would become for her family.

12-year-old Ruby has got various symptoms which have developed over many years. She has lots of diagnoses, but no defined condition, which means her symptoms are difficult to manage.

“The night Adnan was born was probably the worst night of my life,” says mum Zainab. “You know giving birth is going to be horrible, but you think there’ll be a reward at the end. And there I was on a ward of new mums with their babies and I was on my own.”

5-year-old Evie has a condition so rare and complicated it remains undiagnosed. Since she was just a few weeks old, Evie has had regular seizures and strokes because of restricted blood flow to her brain. These have left her weak on the right side of her body, unable to talk and registered blind.

Supported mum, Britt, describes the highs and lows of being a mum to a child with a life-limiting condition and credits Shooting Star Children’s Hospices with coming to her family’s rescue when they needed it the most.