Joshy’s mum Jill shares why having Claire House in Liverpool has transformed everything for their family

Busily chopping toy vegetables at a Stay and Play session at Claire House Liverpool, Jill’s little boy is in his element running his own make-believe restaurant.

At four years old, Joshy is full of personality – clever, outgoing, and, as his mum proudly admits, “dead bossy”.

But behind his cheeky smile is a complex genetic condition – one so rare his mum says only around 100 children in the world are known to have it.

“Joshy’s a happy kid. He loves his brother and loves the swings at the playground.

“He loves role-playing with toy food, acting like a restaurant owner and bossing everyone around,” laughs Jill. “The funny thing about that is, he doesn’t eat.”

Despite Joshy’s love of playing chef, his condition affects his immune and digestive systems, meaning he can’t absorb nutrients. Instead, he’s fed by TPN - nutrition given directly into his bloodstream through a central line.

It means constant care, medical routines, and the overwhelming worry about infections or sudden hospital trips.

“Looking after Joshy is more than a full‑time job,” admits Jill.

“He’s often in hospital because any temperature means a 48-hour stay. There’s always the fear he couldn’t cope with a serious infection.”

Thankfully, Claire House Liverpool is just 15 minutes from the family’s home in Orrell Park and next to Alder Hey, providing huge reassurance.

“If Joshy gets a temperature while he’s there, the hospital is five minutes away. That closeness is everything.

“At Claire House Wirral, we’d have to drive through the tunnel to Alder Hey or go to an unfamiliar hospital. In Liverpool, we don’t worry.

“When he’s an inpatient , the girls from Claire House stay with Joshy so I can grab a cuppa or nip to the Liverpool site for a massage. It’s lovely seeing them appear at the door because hospitals can be very lonely.

“He spends time at Claire House Liverpool every few weeks and has had visits during his hospital stays to enjoy the gardens and have a break.”

Pressing the buzzer to get in and making a beeline for the daycare room, Joshy feels right at home at Claire House Liverpool.

“He rules the roost!” laughs Jill. “Alice and Aimee from the Planned Care Team set up his favourite toys, organise pretend afternoon teas, and help him ‘cook’. When he’s done, he snuggles into a beanbag with Mario Kart.

“It gives me a few hours off to tidy up or have breakfast with a friend, whereas travelling to the Wirral would take most of my break.”

Joshy has gradually built up to overnight stays in the Wirral, giving Jill time with her eldest son, Anthony, eight, and a couple of nights away with her mum.

“I never worry when he’s at Claire House. The nurses are so confident, and dead relaxed. When you have a child with complex needs, it’s not just babysitting. It’s a massive responsibility, because things can take a turn at any point.

“But they know everything about his care. They’re not fazed by anything.”

Being able to have respite in Liverpool, with Alder Hey close for emergencies, would make everything feel even safer.

At 10-months-old, Joshy was diagnosed with TTC7A deficiency, a rare condition associated with intestinal failure and immunodeficiency. Many children don’t reach their second birthday.

“It was complete shock,” Jill remembers. “You think your baby is going to live a long life.

“But Joshy surprises us every day. He’s amazing. We live day to day and enjoy him exactly as he is.”

The family heard about Claire House from their immunology nurse. However, the word ‘hospice’ felt frightening.

“You just think end of life,” Jill says. “But Claire House is everything in between — support, respite, play, therapy, people who understand.

“Because of his condition, Joshy couldn’t go to nursery. But after a year of support from the hospice, he’s sociable and starts school in September. He feels secure in other people’s care, which he wouldn’t without Claire House.”

As plans to transform the building in West Derby into a 24/7 children's hospice begin, Jill is passionate about what it means for families.

“So many children need this place, it benefits everyone. It’s reassuring to know if a family member had complex needs, they’d be in safe hands. It’s a community.

“Liverpool gets behind everything, I know we can make this happen.”