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Family mission for Mitochondrial Awareness Week

CORONATION Street fans may be aware of the heartbreaking story line that has unfolded on their screens when soap favourite Leanne Battersby’s son Oliver was diagnosed with an incurable form of mitochondrial disease.

While the story line has captured the hearts of viewers, for Kinawely parents Fiona and Thomas Drumm this has been their reality as son Lochlainn (20) and daughter Eilis (14) were diagnosed with a milder and non-fatal form of the condition. 

“We were told back in 2013 that Lochlainn and Eilis were only two out of six people in the world that had this condition.

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“For us when Lochlainn was born he seemed to be fine. He was standing at nine months, walking at 15 and then when he was about two or three we could see things starting to change with his balance. In 2004 he was diagnosed as being partially sighted in both eyes.”

Fiona told the Herald that after years of no answers, further deterioration to Lochlainn’s health occurred in 2006 when he suddenly lost the feeling in his right hand.

“His fist clenched up and he couldn’t straighten out his fingers. A few months later it happened in his left hand and he began wearing dynamic splints that basically pulled his fingers out to get the feeling back.

“After that his legs went from beneath him and his calf muscles started to waste away which led to further splints being used to which he still wears.”

Later on that same year, the family welcomed the birth of their fourth child Eilis.

“Like Lochlainn, Eilis had no immediate signs but after a number of years we realised her development was delayed.

“After so many years of tests and trails, it was only in 2013 that we got a confirmed diagnosis of Mitochondrial disease for them both and there is no cure.”

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While the future remains unknown for the Drumm family, Fiona admits that she has been “blown away” by the strength and courage her children have shown.

“They just want a chance in life like anybody else. Yes they have their difficulties but they make the best of it,” said Fiona.

“The one thing is they never complain, they never say why me? In fact they would do the opposite, their determination is absolutely unbelievable.

“They’re both known as Kinawley’s biggest supporters and even though they might not see fully what’s going on, they will ask who scored and feel the momentum build from spectator reaction.”

Over the course of lockdown, both Fiona and Thomas have teamed up with the Lily Foundation in the ‘Mito Miles’ challenge ahead of Global Mitochondrial Disease Awareness Week (13-19 September)

“We decided to walk and cycle 1,000 miles each to raise money for funded research.

“So far we have raised over £5,000 which we are delighted with.”

To donate to the Lily Foundation you can do so by visiting www.justgiving.com/fundraising/FionaThomas Drumm-Malin2Mizen or you can simply go on Fiona’s Facebook page to place a donation under the JustGiving page. 

 

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The Fermanagh Herald is published by North West of Ireland Printing & Publishing Company Limited, trading as North-West News Group.
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