Real lives, real stories

James has a rare form of cerebral palsy. Now aged 15, James can’t walk and communicates only with eye gaze and sounds (including lots of laughter!)

William (8) has a rare neurological condition called Pelizaeus Merzbacher Disease (PMD) - signals to and from his brain get confused impacting William

In 2019 we shared the story of William, a sociable and fun-loving little boy who was born with the arteries of his heart the wrong way round. After

When Sully was born, he seemed perfectly healthy. He wasn’t feeding well and struggled with a lot of sickness and acid reflux, but these early

This is Isla and her big sister, Darcey, and mum, Georgia. For most families, summertime means going to the beach and making sandcastles, or

Finley's parents received the diagnosis that he had a rare condition called lymphangioma at his 20-week-scan. Lymphangioma causes lymph fluid to back

At just 12 weeks-old, Drae was diagnosed with TBCK syndrome - an incredibly rare and complex neurogenetic disorder. Sadly, few children with TBCK

16 year old Paddy’s condition is a bit of a mystery. He was born with intractable epilepsy (a complex seizure disorder that doesn’t respond well to

Addy’s condition is a fast thief. Our daughter is fading in front of our eyes. It feels like the two-year-old girl in the photos on my wall is not my

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

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

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

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 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.”

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."

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

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 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.

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

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

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

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

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.