Watch Grace Cogan’s Temple Street journey in the third of Temple Street Foundation’s emotional new ‘Living Proof’ series of patient videos. The stories, highlight the real-life experiences of just a few of the families who benefit from your donations and support.
Temple Street’s new video features the wonderful Grace Cogan from Monaghan. Grace is 11 years old but has been coming to the hospital since she was a tiny baby for treatment of a rare metabolic disorder called Morquio Syndrome.
Since her diagnosis, Grace has become a familiar face in Temple Street, regularly making the long journey from Castleblaney to North Dublin for treatment and many serious operations. In fact, little Grace has had eleven general anaesthetics in her short life.
“Temple Street to me is my comfort blanket. If there’s anything going on, if there’s something I’m worried about, it doesn’t matter what it is because I can lift the phone and ring somebody. It’s like a second home.” – Gráinne, Grace’s Mum.
Grace’s story is part of Temple Street Foundation’s ‘Living Proof’ series – released to highlighted the profound and transformative impact that donations have on the hospital, the children in its care and their families. Over the past two years alone, 89% of medical equipment bought for the hospital has been funded by the generosity of Temple Street supporters.
This year, Grace is one of the faces of Temple Street’s ‘Trick or Treat’ campaign, proudly supported by MiWadi. She was joined by some of our other little patients who all dressed up as ghouls, monsters and dragons to encourage people all over Ireland to host a Halloween party to raise vital funds for the hospital.
Chief Executive of Temple Street Foundation, Denise Fitzgerald says, “It has been a privilege to get to know Grace and her family over the years and to see the bravery and positivity with which they have faced the treatments and surgeries that Grace has needed in Temple Street. Despite all she has been through, Grace has still found the time to become a wonderful ambassador for Temple Street – taking part in a whole host of fun fundraising activities from taking part in our Trick or Treat photos and videos to even being the voice of Temple Street in our radio ads! We are so grateful to her and to her parents – Gráinne and David – for sharing their incredible story with us.
“There are so many children just like Grace in Temple Street who need great care right now. With your support, the hospital can continue to provide world-class care to those children who need it most. From vital, life-saving equipment to ground-breaking research – your donations have the power to change little lives for the better.”
To sign up for this year’s Trick or Treat for Temple Street, simply visit www.templestreet.ie/trickortreat.
Grace Cogan is truly one in a million. This talented little star of the stage is only the third child in Ireland to be diagnosed with the rare metabolic condition Mucopolysaccharidosis – or ‘Morquio’ as Grace calls it. Grace’s amazing story began when she was just six weeks old.
One day, while her dad David was changing her, he noticed a small lump on Grace’s back. An X-Ray revealed that some of the vertebrae in Grace’s spine were out of line. So an appointment was made to see Professor McCormack in Temple Street.
Neither Grace’s mum Grainne nor her dad David realised that this would be the first of many visits Grace would make to Temple Street over the years.
“Temple Street to me is my comfort blanket. If there’s anything going on, if there’s something I’m worried about, it doesn’t matter what it is because I can lift the phone and ring somebody. It’s like a second home.” – Grainne, Grace’s mum.
Grace’s condition causes her bones to stop growing and she is at constant risk of fractures and infection. The best person to describe the real impact of this condition on an 11 year old girl, is Grace herself.
“It gives me pains. And it makes me smaller than everyone else and I can’t go on bouncy castles or trampolines.” – Grace
Throughout her life, Grace has needed constant, ongoing care from the expert teams in Temple Street.
“Grace has had her hips operated on. She’s had her leg operated on. She’s had ,MRIs. She’s had grommets put in, grommets taken out. She’s had 12 general anaesthetics and she’s had 2 life-threatening surgeries – all in Temple Street. They know her inside out now.” – Grainne, Grace’s mum.
Over the last few years the staff in Temple Street have become a very special part of Grace’s family. They have cared for her, treated her and, as far as Grainne and David are concerned, they have often saved her life.
“When Grace was about 18 months she had a little fall in the sitting room. She was crawling, trying to get on to a toy and she fell down on to the ground. Her spinal cord was damaged. She lost all the power in her arms and her leg and she went blue. We were that close to losing her that day.” – Grainne, Grace’s mum.
But Grainne didn’t panic.
“I kept saying we need to get her to Temple Street because I knew in Temple Street they’d know straight away what needed to be done.” – Grainne, Grace’s mum.
When they arrived at Temple Street, Professor McCormack met Grace at the door and took her straight to the operating theatre.
“They’re just amazing. They’ve got so many children up there but they make each and every one feel like they’re special. They’re simply amazing, they really, really are.” – Grainne, Grace’s mum.
Grace recovered from her surgery but her condition is progressive and life-limiting. Grainne and David know that Grace will probably need more surgeries as she grows older. But they have never hidden the realities of her condition from Grace.
“Grace has asked ‘will I always be this size? Will I get taller?’ And we’ve told her that she’s always going to be small and that she’ll probably need her wheelchair a lot more as she gets older. But she just gets on with it.” – Grainne, Grace’s mum.
Grace has faced so many challenges over her short life, but no matter what, her amazing determination and her infectious smile shine through.
“If someone said to me tomorrow morning we can take away all the suffering and pain that she goes through but you’ll have a different child, I wouldn’t take that, I would want Grace as she is.” – Grainne, Grace’s mum.
Thankfully, Grace has now started a new medicine which is reducing the amount of pain she has to endure. But when you ask Grace about her new medicine, she’ll tell you the real reason it is so important.
“It makes me feel taller.” – Grace