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Sunderland teenager ‘writing medical history’ with baffling rare eye condition

Chloe Gorringe (13) of Aldershot Road, Farringdon, Sunderland, who has a rare genetic disorder which has affected her sight, with sister Courtney (right)

Chloe Gorringe (13) of Aldershot Road, Farringdon, Sunderland, who has a rare genetic disorder which has affected her sight, with sister Courtney (right)

A BRAVE teenager suffering from a rare genetic disorder which has rendered her blind is hoping to meet other youngsters with the same condition.

It took doctors 11 years to finally diagnose 13-year-old Chloe Gorringe, of Farringdon, with mitochondrial defect Sengers Syndrome.

And so far her mum Tracey, 36, and step-dad Gary Pescod, 43, have drawn a blank in trying to get in touch with other sufferers so they can share their experiences.

The condition, which is thought to be hereditary, means Chloe, a pupil at Sandhill View School in Thorney Close, has to have nightly injections and take 10 different types of medication.

In addition to being registered blind as a result of her severe visual impairment, Chloe suffers from problems with growth, memory and recurrent chest infections. She also has a heart problem, which could lead to her needing a transplant in the future.

“I look at Chloe and I don’t know why she does certain things, I’m just having to learn day by day by looking at Chloe. The doctors can’t tell me either. There are so few with Sengers Syndrome, they say she is writing history every day. But that doesn’t help us. If there is somebody out there who is going through the same, it would help the whole family.”

Tracey, a travel agent, had noticed there was something wrong as soon as her daughter was born. Chloe had cataracts in both eyes and a type of spina bifida protruding from her back.

“I was gutted, absolutely mortified,” Tracey told the Echo. “I didn’t expect any of this. She went straight into intensive care.”

Chloe had surgery to remove the cataracts and the lenses from her eyes at just a few days old. At six months old, she underwent a six-hour operation to remove the growth on her 
back.

When Chloe was just a few months old, Tracey found out she was pregnant again. And she faced a difficult dilemma after being told there was a one-in- four chance that the new baby would have the same condition.

“I cried for days, wondering what I should do,” she said. “We didn’t know whether Chloe would read, write, walk or talk. How would we cope with two?”

But Chloe’s little sister Courtney, 12, was born healthy.

“Courtney was a godsend,” Tracey said. “She really helps Chloe. They don’t really fight. They don’t argue at all, in fact they help each other.”

Chloe has not let her condition get in the way of enjoying life. She likes to ride her sister’s pony, Ross, and enjoys knitting and going to the swimming pool. She also grows tomatoes in a greenhouse in her garden.

“We prefer to concentrate on the things that she can do, rather than what she can’t do,” Tracey added.

 

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