Doing it for Mags

A GYM in Coolmine is holding a unique fundraiser next week to help pay for treatment for a 33-year-old woman with a rare, painful and life-threatening condition.

Animal Barbell Gym in Coolmine Industrial Estate is hosting ‘Day of the Dead…Lifts’ on April 1, and hopes to raise €5,000 to help pay for potentially lifesaving treatment for Megan Forkan – known to family and friends as Mags – who suffers from Ehlers Danlos Syndrome (EDS).

Mags was an active, independent woman and had the condition all her life before finding out it was actually the cause behind the various odd and seemingly unconnected health problems she suffered from.

Recently, however, it’s brought on much more serious problems such as Cranial Cervical Instability and Chiari Malformation, causing her health to deteriorate to the point where even turning her head could cause a stroke or further spinal injury.

In Ireland, treatment for these problems is available to people who have them from trauma such as car accidents, but not for someone who has the underlying EDS, which makes tissue so fragile the whole operation is much more complex and risky.  

“Because this disease is so rare most doctors in their whole careers might not come across a case like this,” says Mags. 

“It can affect multiple systems in your body, so you really need a multi-disciplinarian team.”

The only specialists willing and able to perform the procedures Mags needs are in the USA. She needs at least two operations, maybe more, and the first is scheduled for April 18.

“At the moment I feel like a ticking time bomb, wondering when will something go wrong,” Mags told Northside People.

“I do have spinal cord damage already. It’s to prevent any further damage so I don’t end up in a wheelchair.

“This operation is not without risks – it’s a high-risk operation, which means it needs to be performed by someone who’s an expert in my condition. And, in reality that doesn’t even exist in England or in Ireland.

“This is my best chance. I had a choice of being left here to deteriorate even further and being happy with the quality of life that I have – or I have a doctor (in the USA) who has told me that there’s a 95 per cent chance that I’m going to get my life back.”

Mags says she’s living in limbo, just waiting for the operation. She’s frustrated that she and others with rare diseases are forced abroad for answers and treatment, and face huge medical bills with no help.

Mags is hopeful that her treatment in the US can get her life back on track before there’s permanent damage. 

“At one stage I was hiking mountains and I am pretty determined that I’m going to get back to that,” she said. “I was very active and I hope that if I’m given the right treatment I might get back to that kind of thing.”

In the past six months, Mags, her husband Jimmy and their family and friends have made tremendous fundraising efforts, organising everything from coffee mornings and row-athons to one man who attempted (but didn’t quite manage) to cycle the elevation of Everest – by cycling up and down a Dublin hill. 

So far, they’ve raised over €60,000 out of an initial target of €80,000. Dean Merton, a family friend who’s organising the dead lifting competition in his Coolmine Gym on April 1, says that the real cost of the operations, as well as recovery in the USA before Mags can travel again, will probably be much higher. 

The dead lifting competition is open to all levels of lifters, who’ll be split into mixed ability teams to see who can lift their portion of the goal weight quickest. 

Dean, who has put together a Facebook page called ‘Day of the Dead Lifts for Mags’ says it’ll be a fun day and not too serious.

“The important thing is raising the money to give Mags back her life,” he said.

“Every donation is welcome, no matter how small, and anyone who wants to come along and try lifting should come around 11am with the event beginning at 12 noon.”

Dean says even absolute beginners are encouraged to join in, and they’ll be shown all the proper techniques before they attempt to lift.

There’s more information on the event, or how to donate to Mags’ cause on the Facebook page or on www.gofundme.com/magsedssurgeryfund.

REPORT: Ciara del Grosso Bates