Charity "changed our life for the better" say parents of little boy from Oldham with Down Syndrome

An Oldham couple whose son was given a life-saving heart operation have heaped praise on a charity who supported them through the experience.

Karen and Mark Shurba, of Hollinwood, say support by Langan's Foundation has enabled them to see their son "move into the next part of his life".

Eight-year-old Alex was born with Downs Syndrome and was quickly diagnosed with a failing heart.

Just one of Alex's four heart ventricles was functioning properly, and in order for him to have surgery, he had to feed and grow.

Says mum Karen: "From the minute he was born, Alex wouldn’t feed properly, and everything was a blur as we struggled from one feed to the next.

Even when consultants fitted him with a NG tube he would sneeze, and it would come out."

One night Karen noticed Alex was crying, something she says was highly unusual: "Mark took him for a ride around the M60, but he wouldn’t stop" she remembers. "In what seemed like no time he was having an eight-hour heart operation at Alder Hey. A couple of days later I went onto the ward and he was surrounded by nurses and he looked like he had given up.”

Shortly afterwards, Karen, whose family hail from Northern Ireland, met two Lagan’s Foundation carers at a charity function and decided to ask for their help. It proved a pivotal step forward.

Even though the organisation was in its infancy, they were able to provide a carer for two hours per week with whom they soon built a strong friendship. Karen reveals: "One time I asked her not to come and she still turned up. She knew that when you refuse help that is actually when you need it most."

The inspiration for the Foundation was Lagan Grant, who tragically passed from a congenital heart condition when just a baby. But the charity that bears her name – Lagan’s Foundation – has been helping poorly children and their parents ever since – including effervescent Alex.

Lagan’s sends trained carers into the homes of children with heart problems and feeding difficulties to allow mum, dad, or their guardian a few hours of priceless respite.

The driving force behind Lagan’s Foundation is Carren Bell, who began the charity shortly after the tragedy of losing daughter Lagan.  Karen says Lagan's mum is an inspiration: "Carren’s passion is clear and she wants to make sure no family goes through what she did. She is courageous, kind and full of drive, she is an inspiration and is all about the children.  Just look at how many families she has helped."

The charity even looked after Alex to allow Mark and Karen a two-day honeymoon in Edinburgh.

Mum Karen was so impressed by the respite care and loving friendship her family received from Lagan's Foundation, that she decided to quit a career in corporate HR and help coordinate the busy charity’s work.

Now a “rough and tumble little boy” Alex loves school and photo-bombing his dad’s Zoom meetings!

Says Karen: “This is our new normal, where we are able to do far more and watch our little boy transition into the next part of his life. This is all thanks to Lagan’s, a charity founded in tragedy but one which has changed lives for the better.”

To donate to Lagan’s, please contact 01204 800300 email info@lagans.org.uk or visit https://lagans.org.uk/

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