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.
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.
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.
Rory was diagnosed with Menkes syndrome when he was five months old. The genetic condition affects copper levels in the body, leaving him tube fed and catheterised, unable to walk and talk, and with weak muscles – but at four-years-old he has lived longer than the doctor’s expected.
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.
Three-year-old Orla has CHARGE Syndrome, a genetic pattern of birth defects which occurs in one in every 10,000 births worldwide. Her family, mum Anna, dad Steve and little brother Sam, rely on Shooting Star Chase to give them a break from Orla’s complex care needs.
“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.”
When Alexia went into premature labour at 23 weeks with son Nathan, she was asked a life-defining question. “Because he was going to be so premature, the doctors asked me what I wanted to do. That decision is crazy for anybody. You’re playing God; do you want your child to live or die?”