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Alex inspires family to fundraise for The Lily Foundation

Rachel McNabb

Reporter:

Rachel McNabb

THE family of a young boy from Ballymena who suffers from a cruel genetic condition are raising funds to help support research into the disease which at present has no cure.

Hazel and James Marks have been inspired to raise funds for The Lily Foundation by their son Alex who was aged two when he was diagnosed with Mitochondrial Disease (Mito).

Mitochondrial Disease is a genetic condition which can be present at birth or can develop later in life. It affects each person differently, depending on which cells are affected. Any or all of the body’s organs can be affected which can cause health issues, including seizures, fatigue, muscle weakness, vision and hearing loss to name but a few. Illness or infection can cause disease progression.

There is no cure for Mitochondrial Disease and it is treated one symptom at a time. It can be fatal and is considered life limiting at best.

The Lily Foundation was founded in 2007 by Liz Curtis in memory of her daughter Lily, who died from Mitochondrial Disease at eight months old.

Alex's family are aiming to raise awareness of the condition as well raise money for the foundation which supports over 300 families.

Alex's mother Hazel said: “Alex is a happy little boy who has a huge determination to enjoy life to the full. No one knows what lies ahead, but what we do know is, we need to help find a cure for Alex and all others who are affected by this cruel disease.

“We are aiming to raise awareness of the condition which is relatively unheard of whilst raising money for The Lily Foundation who fund research and are committed to finding a cure.

“Receiving a diagnosis of Mitochondrial Disease is life changing for the whole family and is difficult to come to terms with as it's so unpredictable. There are no Mitochondrial Specialists in Northern Ireland and we travel regularly to appointments in Newcastle Upon Tyne.

“We are very grateful for the family support offered by The Lily Foundation.”

The family started fundraising in June and to date have raised over £6,000 through two charity fundraisers and their JustGiving page "Alex's Advocates".

Hazel added: “The first charity fundraiser was a disco last month held in Ballymena Bowling Club which raised over £1800. Alex's grandmother Margaret then held  a variety concert in Galgorm Community Centre on Saturday, October 20 which raised over £2500.

“We would like to say a massive thank you to everyone who supported either event, and anyone who sent donations or raffle prizes.”

Anyone who wishes to donate can do so via JustGiving “Alex’s Advocates”

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