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.
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.
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?”
Baby Isabelle sadly died aged just one in 2013 and her devastated family were cared for by Shooting Star Chase after her short life, and continue to receive vital support. Isabelle’s mum, Leanne, is taking part in the Sunrise Walk to help bereaved families like hers.
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.
“Even though we had nearly lost Livy a couple of times, it was a still a huge shock when she died,” says mum Donna. “I thought I would be prepared, but nothing can prepare you for the death of your child.”