Real lives, real stories

Alfie has a condition called an 1P36 deletion – as a result he has problems with his sight and hearing, heart defects and brain abnormalities. Alfie’s mum, Charmaine, tells us how they're coping with the Coronavirus situation.

Two years ago, Betty was diagnosed with an aggressive brain tumour. Her treatment left her with complex needs. Mum Jen explains how she looking for the positives in the Coronavirus situation

Six-year-old Rachel was born with a life-threatening heart condition and has spent more than two years of her life in hospital. Her Mum and Dad, Bracken and Mick tell her story

Annabelle has Juvenile Battens Disease, a devastating condition that has already robbed her of her sight and that will one day rob her of her life. Mum Lisa talks about her diagnosis and how Julia's House have helped the whole family

Isabella has chronic lung disease and has to be on oxygen. She has tubes into her nose and these are attached to an oxygen canister – she struggles to breathe without it.

Seven-year-old William was born with the main arteries of his heart the wrong way round. He had open heart surgery at a week old which led to a catastrophic chain of events for his family. 

Time for Carmela is precious, she has an aggressive rare form of Muscular Dystrophy. Her muscles are weak and her strength is fading year on year. Your support will help make every moment count this Christmas...

Watching your child struggling under the enormous pressure of caring for their child can leave grandparents feeling heartbroken and helpless, but Julia's House Great Mates is here to help

One-year-old Isabel was born very prematurely and has brain damage, cerebral palsy and epilepsy. Mum Shelley talks about how the worry and exhaustion of looking after her has put a strain on the whole family.

Ben has a rare chromosome disorder which has left him with breathing and feeding difficulties, heart defects, slow growth and poor hearing. No-one knows how long Ben will live. Despite this, he is a wonderfully smiley, cheeky boy.

Lydia, mum to Darcie and Hunter talks about the emotional and logistical nightmare of finding yourself with two children with a life-threatening condition

Maria tells us about her role in being a buddy to the brothers and sisters of the children we support

The Julia's House sibling service is an absolute godsend. It's giving my children the chance to experience a normal childhood when life for them is about as far from normal as it gets. 

I have learnt to slow down, to be able to give families the time they need and through giving that time really come to know who they are and what they need from Julia’s House