Real lives, real stories

Annabelle and Robbie’s Story

17 year old Annabelle and her 10 year old brother Robbie have Juvenile Batten Disease – a degenerative and life-limiting neurological condition which

Diana's Story

When my baby sister Gabby was born she soon started having seizures and that’s when we realised she wasn’t a healthy baby.

Abigail's Story

Abigail 14, was born with Holoprosencephaly (HPE), an extremely rare condition which affects just 1 in 170,000 children.

Josselin’s Story

Josselin doesn’t understand that she needs to close her eyes and go to sleep. She can be awake constantly for three days and three nights and just

Josh's story

Teenager Josh loves acting and drama - and spending time with friends.

Ted's Story

When Ted visits the hospice it's his special place, which is huge for a 12-year-old boy - to actually have somewhere to belong.

Johnathon's story

Johnathon was born with his tummy connected to his lungs. They said, “Don’t expect too much. He’s not going to make it out of NICU.”

Isla-Rae's story

When I went for my 27 week scan, I could feel something wasn’t right. After scanning me, the consultant said, "We need to get these babies out."

Tammy, Tehya and Talee's story

Ten-year-old Tehya has a rare genetic condition which affects her growth, her breathing and her muscles. It is thought this may have also been the

Carmela's story

Lockdown has been a sad time for Carmela, missing her daddy - and her Julia’s House nurses. But now she’s enjoying care again… and some unusual fun

Reuben and Harry's story

Reuben was born with a condition that causes his brain to slowly deteriorate - it's so rare that they haven't got a name for it yet.

Aurelia and Aurora's story

The girls have identical heart conditions and they warned us then – as they still warn us now – that they might not live for much longer.

Ellie's Story

Ellie’s family were torn apart by the devastating news that their beautiful, smiley baby girl had an aggressive brain tumour.

Darcie and Hunter's Story

When Hunter was born we were devastated. It was obvious straight away he had the same condition as his sister Darcie. It was a huge blow to me and Ben

William's Story

William was born with the arteries of his heart the wrong way round. It was the beginning of a catastrophic chain of events.

Our surrogate ‘Big Sister’

Sibling worker Maria loves being a buddy, a confidante and a “big sister” to the brothers and sisters of the children we support.

Taking the positives from a pandemic

The world went dark for Betty’s parents as she battled a brain tumour. Now she’s in remission they feel hopeful, even in the shadow of a pandemic.

Isabella’s Story

Little Isabella has chronic lung disease and fights for every breath. She needs a constant supply of oxygen in heavy bottles so going anywhere is a

Annabelle’s Story

Lively teenager Annabelle is making the most of every precious moment of her life – a life slowly being taken by a cruel and devastating condition.