Kind-hearted staff at Newcastle's Centre for Life gave Chloe Gorringe, who is registered blind, her first ever whirl around an ice rink after they opened the annual attraction especially for her.
Chloe, 13, who lives in Sunderland with mum Tracey Pescod, step-dad Gary and younger sister Courtney, suffers from Sengers Syndrome, a very rare condition which has robbed her of her sight, and she had just attended one of her regular hospital appointments when her mother decided on an impromptu visit to Life to cheer them both up.
Tracey had been left upset after a meeting with a stand-in doctor, and says: “We came out of the hospital and I said to Chloe ‘I tell you what, shall we spend the day together and go the Life centre’ where she’d been before with the school.”
It was there that a staff member called Fiona noticed Tracey upset and during a chat invited them to try out their outdoor ice rink, which is installed there every year for the festive period, even though it was not due to open until the next day.
Then another worker called Nicola helped guide Chloe around the ice, with lots of encouragement.
“They were lovely,” says Tracey, and it made a real difference to a day where she’d failed to receive answers to questions about her daughter’s condition.
The 36-year-old already struggles with many unknowns about Sengers Syndrome, which took more than 11 years to be properly diagnosed in her daughter.
Chloe was born with congenital cataracts and Tracey first noticed something was wrong “when I looked into her eyes. She had tiny white dots in them”.
The baby had her first operation within days to remove the cataracts, to be followed by others including a six-hour one at just months old to remove a bulge, a form of spina bifida, from the back of her neck.
The syndrome is a mitochondrial disorder, linked to defective DNA, and can lead to other associated problems such as an enlarged heart, so Chloe, who attends Sandhill View school which has a visually impaired unit, cannot do PE.
She takes about 10 tablets a day and, says Tracey, “she’s coped with it all fantastically. And she’s such a sweet little girl. She would do anything for you.”
Tracey’s gran is a huge support and daughter Courtney also helps Chloe a lot.
“It’s like they’re joined at the hip; they don’t really fight. They’re both so nice.“
Chloe can’t walk far and, while she wears contact lenses, can’t see enough to work out space, depth or distance
“She’s under a few different hospitals in the North East, all the ones in Newcastle and Sunderland,” says Tracey, who works in Thomas Cook travel agency.
She adds: “It’s such a rare condition that it took 11 years to find out exactly what it was.”
The diagnosis finally came from a centre in Holland which tested a muscle biopsy from Chloe’s leg.
“The professor at the RVI says she is probably one of 30 in the UK and 75 in the world.”
Sengers Syndrome is passed down through ancestors, usually on the female side, but Tracey has had her own DNA checked and, having looked back over her family history, says: “I can’t see where it could have come from”.
Tracey added: “The doctors say Chloe is re-writing the history books. That’s the only way that they are able to tell what is happening with this.”
Some good news on the horizon is that Chloe is to receive an award at a school ceremony at the Stadium of Light.