‘It makes me smaller than everyone else and I can’t go on bouncy castles’

Grace Cogan, aged eleven, has been going to Temple Street since she was born to treat her rare condition.

The little girl from Monaghan has a rare metabolic disorder known as Morquio Syndrome. It affects the body's ability to process long chains of sugar molecules which it uses as lubricants and shock absorbers. In a video produced by Temple Street as part of their "Living Proof" series, which highlights the fantastic impact donations to the hospital can have on patients, Grace and her parents give an insight on what it's like to suffer from Morquio.

Watch our emotional new 'Living Proof' video featuring wonderful Grace Cogan, aged 11, from Monaghan, who has been coming to Temple Street since she was a tiny baby for treatment for a rare metabolic disorder called Morquio Syndrome.https://t.co/mYGLdVVqK1

— Temple Street (@Temple_Street) October 15, 2018

In it, Grace explains how the disorder affects her. She suffers from pain and says:

"It makes me smaller than everyone else and I can't go on bouncy castles or trampolines and I can't do gymnastics or stuff like that".

In the emotive video, Grace's mum reveals the struggle for acceptance she went through when her daughter was born. She explains that she felt really guilty for three or four years because she says, "I wanted another baby". Morquio is a progressive and incurable disease and Grace has been through extensive medical intervention to try and improve her quality of life. Grace's mum says she has had "two life-threatening surgeries" along with hip and leg surgeries and countless MRIs - all in Temple Street. Most grievously, at just eighteen-months-old, Grace had a little fall and suffered spinal chord injury, which she had to have surgery for. The outcome looked exceedingly bleak and, in the video, Grace's dad says:

"We thought she was dead."

Grace's parents convey their sincere gratitude to Temple Street and Grace's mum says:

"I trust them with her life."

Grace is likely to need to more surgery, but her parents have faith in Temple Street, which has become their "comfort blanket". The hospital performs truly extraordinary work every day and the level of care and attention they give to each child is exceptional; as Grace's mum testifies:

"They've got so many children up there but they make each and every child feel that they're special."

Temple Street rely on donations for the resources they need to give essential care to children like Grace. As they say:

"Your kindness saves lives."