Parents running Great North Run for daughters rare condition

BROUGHT back from the brink of death more times than her family can remember, little Ellie Cockburn is a born survivor.

ellie cockburn, Myastheria Gravis Association, Tracey Cockburn, Gary Wilson, Sarah Rushbrooke

BROUGHT back from the brink of death more times than her family can remember, little Ellie Cockburn is a born survivor.

The six-year-old sufferers from a rare condition that means she can stop breathing at any time.

In her short life, Ellie, who has Congenital Myasthenia Syndrome (CMS), has already suffered many near-fatal cardiac arrests and her family must always be on alert for signs she is about to have an attack.

Also known as the Rag Doll disease, CMS is so rare doctors struggled to tell her parents, Tracey and Mark, from Walkergate, Newcastle, what was wrong.

At just six months old, Ellie had a fit and stopped breathing during a trip to the Metrocentre.

Tracey, who has three other daughters, Faye, 20, Beth, 16, and Jessica, 10, said: “We were in a friend’s car when she started to make funny noises, then she went blue and floppy.

“My friend resuscitated her while the ambulance came.”

Tracey, who is married to 40-year-old Mark, a Nissan worker, said: “A week later I was at home with Ellie when she started struggling to breathe and we had to call an ambulance.

“She was kept in for four days and they ran more tests, but they couldn’t find anything wrong.”

Ellie’s health grew worse and she suffered three heart attacks.

The attacks continued until a doctor at Newcastle General Hospital noticed her eyes drooping and remembered that was a sign of the rare condition, which leads to weakness in the muscles often making it difficult to chew, swallow, or talk.

Now the St Alban’s Primary School pupil is given a stimulant drug every four hours and is accompanied by an oxygen bottle, a ventilator and suction machine wherever she goes.

In a bid to raise awareness of the condition, Tracey, 40, and her 42-year-old sister Sarah are set to take part in the 30th Great North Run.

The pair will be joined by a friend as they set out on the 13.1-mile route in aid of the Myastenia Gravis Association.

Full-time mum Tracey said: “She’s such a cheerful, loving little girl.

“Even when she was really ill and hooked up to all sorts of equipment in hospital, she would be trying to smile at me.

“I used to look at Ellie and think why has this happened to her? She’s stopped breathing more times than we can remember.

“The other day she was out playing in the garden with her sister when she sat down on the step and couldn’t move. It comes on quite suddenly.

“She looks so normal but tires so easily. People look at her and think she’s too big to be pushed in a chair because they don’t realise. I am more relaxed now but it’s been really difficult to get to leaving her knowing what can happen.

“I used to wait outside the school with my phone in my hand waiting for the call for a long time. It took a while for the phone to go into my handbag.”

But, despite the fears of her family, Ellie has shown a strong determination to lead as normal a life as possible.

Although she tires after just a few minutes and will be reliant on her medication for the rest of her life, Ellie’s infectious love of life touches all who meet her.

With the six-year-old enjoying life to the full despite her serious condition, her family have vowed to help sufferers by taking part in the half-marathon.

To support Sarah and Tracey’s Great North Run, visit


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