“I am a Shooting Star Chase mum. A few years ago, that would have meant very little to me. Today, it means I belong to a group of parents with a life-limiting condition and we will probably have to say goodbye to our children way too early.”
16-year-old Josh was fit, sporty and unassuming. He’d had no significant health concerns, until one day the family’s world came crashing down. Mum Caroline shares their story.
Watch the powerful and touching alternative Christmas advert produced by Shape History in aid of Shooting Star Chase, highlighting the importance of awareness and support at this time of year.
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.
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.