Local Weather

Partly Cloudy

Partly Cloudy

max temp: 24°C

min temp: 16°C

Five-day forecast

Tribute to young Newbury Park woman who died from rare genetic disorder

Carly Torrington at V Festival in 2010 Carly Torrington at V Festival in 2010

Thursday, August 21, 2014
4:46 PM

A young woman who was left paralysed and blind from an extremely rare genetic disorder has died after a rapid deterioration in her health.

To send a link to this page to a friend, you must be logged in.

Mitochondrial Disorder

Mitochondrial disease is a genetic disorder that is often inherited from the sufferer’s mother.

It affects about one in 5,000 people. However, Carly had the POLG1 mutation which only affects one in a million people.

Because it can affect people of any age and involve different organs, mitochondrial disease can be very difficult to diagnose.

Faulty mitochondria have been linked to a number of diseases including diabetes, Alzheimer’s and epilepsy.

There is no known cure but it can now be prevented.

Recent medical advances have developed a process called mitochondrial transfer in which someone with mitochondrial disease can have a baby without passing on the disorder.

Carly Torrington, 26, from Newbury Park, was diagnosed with mitochondrial disorder in 2011 after suffering a stroke.

Just weeks after leaving college, she was hospitalised and became reliant on nurses to feed and dress her.

It seemed like the former pupil of Seven Kings High School was making a recovery and she was able to walk short distances on her crutches, ride a tricycle and attend house parties.

But, after the death of her grandfather and an accident involving her boyfriend, Carly had a second stroke and encountered a series of medical complications which led to her death on July 30.

Her family and best friend have paid tribute to Carly, whose story was first reported in the Recorder three years ago.

Carly’s mum, Chris Roberts, 62, said: “She was so kind and caring and thoughtful and so very, very brave.

She had a wicked sense of humour that stayed with her right to the very end.”

Without the care and love of her boyfriend of eight years, Pete, it is likely that Carly would have had to spend her last days in a nursing home.

Chris said: “When the diagnosis was made and everyone fell apart he just soldiered on and looked after her really well.”

They met while she was working in Fuerteventura on her gap year and clicked straight away.

Pete said: “For someone who was timid and shy Carly had a strength behind her which was more than anyone could have imagined.

“She was always friendly and always happy.”

Her best friend, Michelle Catterick, said: “One of the hardest moments for me was when Carly lost the ability to even be able to tuck her hair behind her ears.

“Such a simple task for you or I, but near impossible for her.”

There is currently no cure for mitochondrial disorder although recent medical advances in the area have made it possible to stop babies being born with the genetic mutation that causes the condition.

Carly’s friends and family are raising money for mitochondrial research and have collected over £2,000 since she died on July 30.

The specific mutation that Carly had affects one in a million people each year and she compared it to winning the lottery.

Chris said: “Carly did say once that it was disappointing that she had to be the one in a million to get this disorder when she could have been the one in a million to win the lottery.

“My poor Carly didn’t win the lottery after all.

“But at least did have her for 26 years and she was remarkable.”

Share this article

0 comments

Comments

Welcome , please leave your message below.

Optional - JPG files only
Optional - MP3 files only
Optional - 3GP, AVI, MOV, MPG or WMV files
Comments

Please log in to leave a comment and share your views with other Ilford Recorder visitors.

We enable people to post comments with the aim of encouraging open debate.

Only people who register and sign up to our terms and conditions can post comments. These terms and conditions explain our house rules and legal guidelines.

Comments are not edited by Ilford Recorder staff prior to publication but may be automatically filtered.

If you have a complaint about a comment please contact us by clicking on the Report This Comment button next to the comment.

Forgotten your password?

Not a member yet?

Register to create your own unique Ilford Recorder account for free.

Signing up is free, quick and easy and offers you the chance to add comments, personalise the site with local information picked just for you, and more.

Sign up now

   Local advertisers

More news articles

Click here to read the Digital Edition of the Ilford Recorder on screen
Use our Wedding site to help you plan your big day!
At WeddingSite we know how much you have to organise for your wedding day, that's why we have designed a set of FREE, simple-to-use tools to make the planning process easy & hassle-free. FIND OUT MORE
Find a date using our online dating and friend finder
You can meet new friends, find romance or simply meet up online with people sharing similar interests and hobbies. FIND OUT MORE
Find a local business using our online directory search
Need a plumber? Or a florist? Or anything else? Search our business directory to find Ilford businesses in just a few seconds. FIND OUT MORE
Family notices from the Ilford Recorder, with readers' tributes
In memoriam, birthdays, weddings, anniversaries, best wishes & special days. FIND OUT MORE

Celebrity / Showbiz See all

Drake has cancelled his Wireless London performance (Photo by Theo Wargo/Getty Images for ESPN)

Fans devastated after Drake cancels Wireless London festival

Rapper Drake has pulled out of his headline appearances at this weekend’s Wireless Festival in London, leaving fans devastated.

Read full story »