A CONSTANT FIGHT

Josselin (16) has CHARGE syndrome, a rare and extremely complex genetic condition which affects children very differently.

Josselin is severely affected. She has had more than 35 operations – so many her mum has lost count. She has trouble swallowing so is tube fed and requires a ventilator at night. She also suffers from heart problems and her heart rate can drop dangerously low, especially when sleeping, so she is monitored overnight. Josselin can’t walk or talk and has no formal way of communicating. She is profoundly deaf and registered blind. “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 when she’s awake, I’m awake. It’s exhausting,” shared mum Karen.

“You spend so much of your time fighting when you have a child like Joss – for the equipment and funding you desperately need.” The family have seen their costs rise hugely over the year, with the energy crisis almost tripling the cost of Josselin’s essential life-support equipment. “We’ve had our house a lot colder than usual this year and we’ve not been using things like the tumble drier, and trying to use the slow cooker and not putting the oven on for just one thing. We’ve never made cutbacks as much as this before,” said Karen. “It’s a relief to have the support of Julia’s House and have someone positive to speak to about everything. It’s nice to know the nurses and carers are there for us and they’re on our side. There aren’t many people who want to look after Josselin. The only break I get is when she is cared for by Julia’s House.”