When Sophia was a baby, she was constantly sick, and was eventually diagnosed with Cockayne Syndrome, a premature aging disorder.
Today, following the heartbreaking diagnosis, the 12-year-old Northwich girl faces numerous challenges and a shortened lifespan.
Mum Rebecca says: “Sophia has a condition which has a very limited life expectancy. It’s a degenerative disease, so over time, she will lose functions as she progresses through life. It’s been four years since she last walked.
“She’s lost some of her hearing and she’s not mobile anymore. We don’t really know how long we have with her.”
Fortunately, Claire House help families with seriously ill children like Sophia make the most of the time they have left, however long or short that may be.
Rebecca continues: “Being at Claire House gives Sophia the chance to be more independent and have social relationships with other people than her family and friends.
“When she goes there for the full day, she packs a bag of her favourite toys and she’ll choose what she’s wearing that day, and she just gets so excited. For her, Claire House is a nice escape where she can just have fun.”
The dedicated care team are also there to support Sophia’s entire family, including dad Andy and Sophia’s older brother’s Jack and Lucas.
Rebecca says: “Claire House is a continuous support to us. It’s basically like an extended family.
“When you don’t know who to turn to next or where to turn next, you can get help and emotional support from them whenever.
“It can be a lonely world when you’re in a situation like ours, with around the clock care that Sophia needs, but Claire House just understand. And when she goes to the hospice, we leave her in safe hands, and we don’t need to worry.”
Dad Andy explains how excited Sophia is when she is staying at Claire House.
“She loves going there and we know she’s going to have fun and she’s going to have laughter. Sophia enjoys that,” he says.
“Two weeks before she’s going there, she’s constantly talking about Claire House. First and foremost, the staff at Claire House have built such a nice relationship with Sophia and they know how to care for her.”
Andy continues: “When Sophia is at Claire House, it gives us the chance to spend some quality time with her brothers, going shopping or taking them out for a meal, because it’s very hard on them as well and it’s a hard balancing act for us as parents.”
Rebecca adds: “As time goes on, Sophia is getting more and more poorly. But for us as a family, Claire House is a comfort blanket. They fully understand what we’re going through as a family and guide us all. They make us feel not alone.”
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