THE mother of a teenage boy with an incredibly rare and terminal condition has talked about how Julia’s House helped ease the pressures of caring for a seriously ill child.

Zoe Grove-Welsh from Swindon praised the children’s hospice charity for being a lifeline for her and son Ted, who has a condition described as being like “childhood Parkinson’s disease”.

Ted was born with a life-limiting condition called Aromatic Amino Acid Decarboxylase Deficiency (AADCd).

He is one of only five children in the UK to have it and there is only around 150 children with the condition worldwide.

Zoe said: “Ted’s neuro transmitters don’t work in the same way as ours, so from birth he wasn’t able to produce dopamine or serotonin, which are vital for everyday living.

“For the first 10 years of his life, he’d have fits that could last up to 10 hours a day.”

The condition caused the youngster to have scoliosis, which has made his spine curve so severely that his lungs would eventually be crushed if he didn’t have surgery to stop this happening.

His additional needs can be difficult to provide and isolating - but this is where the hospice’ support proved vital.

Zoe said: “Ted doesn’t get invited to parties or go to other people’s houses like his siblings do, but when he goes to the Julia’s House hospice, it’s like his own special place.

“That’s huge for a 13-year-old boy – to feel like you have somewhere to belong.

“It’s exhausting caring 24/7 for a child who is incredibly disabled. So when the nurses and carers from Julia’s House come in to our home and take over for a few hours, it literally lightens everybody’s day up.

“It means I can go for a walk with my younger daughter Emmie, and I don’t have to worry about Ted because I know he’s happy and safe.

“Ted’s got the longest limbs ever and it’s really awkward to move him now,/ So, the time that Julia’s House gives us is not just essential for our mental wellbeing it’s also really helpful to have that physical break too.

“My mum died in a hospice due to cancer, so when a hospice was first suggested to us for Ted, we thought the worst and found that really hard as a family. But we couldn’t have been more wrong – Julia’s House has had such a positive impact on all of us, and especially Ted.

“He’s our little hero – he’s so special. On the darkest of days, when you’re sat in intensive care with him, he’ll look at you as if to say, ‘I’m okay, Mum. We can do this.’ He’s got an inner strength which has taught us so much.”