Edinburgh mum whose baby was diagnosed with rare tumour at two weeks old supports charity appeal

An Edinburgh mum, whose daughter was diagnosed with a rare tumour at just 16 days old, is supporting a charity appeal to raise funds for children and families at Edinburgh’s new children’s hospital.

Wednesday, 21st April 2021, 12:30 pm
Updated Wednesday, 21st April 2021, 12:48 pm

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Emily Turnbull’s daughter Aurora-Grace, known as Rory, was two weeks old when the family noticed she had a swollen stomach and was very unsettled. After several visits to the GP, they were sent to the Sick Kids where scans revealed Rory had a rare cancer called Neuroblastoma. She was given a 30 per cent chance of survival.

Emily said: “We were devastated. We had only just brought Rory home from the hospital two weeks before, and we were now having to explain to her big brother Jacob, who was three at the time, that his long-awaited baby sister had to go back to the hospital. For him, it was as if she’d just vanished. It was heartbreaking.

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Rory was given just a 30 per cent chance of survival when she was diagnosed at two weeks old

“The fear of losing Rory was so real. The anxiety was overwhelming and the tears never stopped, but we had to fight. For weeks, Rory underwent what felt like an endless number of tests, blood transfusions, scans, general anaesthetics and various types of chemotherapy.

“The doctors even recommended minimal handling. As a mum, all I wanted to do was hold my baby girl, but I couldn’t. The possibility of never getting to hold her again felt physical painful.

“We had a small glimmer of hope when Rory’s abdomen started to shrink after the first round of chemo, but then she began to quickly deteriorate again and was rushed to intensive care with sepsis. She was put into an induced coma, was ventilated and we prepared for the worst.

“Thankfully, our little girl kept fighting and two weeks later, we were allowed to hold her. I never thought there could be so much joy in something so simple.”

Emily will always be grateful for the care and support Rory and their family received during their time in hospital. Now, they are backing Edinburgh Children’s Hospital Charity’s (ECHC) new More Than A Hospital appeal

Now, Emily and her family are backing Edinburgh Children’s Hospital Charity’s (ECHC) new More Than A Hospital appeal, which aims to raise funds to support children, young people and families at the Royal Hospital for Children and Young People (RHCYP).

Emily added: “We’ve been through the most terrifying time of our lives, but the care and support from the hospital staff and ECHC really helped us through. We were so grateful to the wonderful charity team who offered a quiet, safe space for parents to have a cuppa, a chat and even a massage – and all on the ward so we could stay right beside Rory.

“The activities provided by the charity were a wonderful distraction and brought happiness even on the toughest of days, particularly when Jacob visited his sister. He loved playing with the toys, joining in with the arts and crafts and music. He really enjoyed his trip to the circus but his favourite ECHC treat was the visit from Hearts Football Team – he’s a huge Jambo and was in his element!

“Eventually, Rory recovered and we were able to take her home. She still has regular outpatient appointments at the new hospital, but she’s now in remission and continues to defy all the odds. The new hospital is phenomenal! The bright spaces with incredible artwork, quirky furniture and interactive games make me less apprehensive to visit and will make such a difference to Rory’s stays there.

Eventually, Emily was able to bring Rory home to be with her family including older brother Jacob

“It’s all thanks to supporters of ECHC that these magical spaces have been created. Looking back, amongst the fear and the unknown, there was play, laughter and fun, thanks to ECHC and the extraordinary hospital staff. We will be forever grateful.”

ECHC supports children, young people and families at the RHCYP through its provision of daily arts activities, ward-based youth work, a family support service, parent beds at every child’s bedside, a hospital shop, and through funding world class medical research and equipment.

Victoria Buchanan, deputy director of fundraising at ECHC, said: “Just like the Sick Kids, the RHCYP will be more than a hospital. With the generosity of our supporters, children and young people will receive the best medical care and ECHC will be there to transform the hospital experience for them and their families.

“No child or young person wants to be in hospital but if they have to be, ECHC will be there to make sure they don’t miss out on their childhoods. With support, we will transform wards into discos, magic shows and art galleries and ensure music and play fill waiting rooms, corridors and courtyards. Our aim is to ease worries and help imaginations to thrive. We rely solely on donations to be able to do this.

ECHC supports children, young people and families at the RHCYP through its provision of daily arts activities, ward-based youth work, a family support service, parent beds at every child’s bedside, a hospital shop, and through funding world class medical research and equipment.

“Edinburgh has a wonderful new building, but children’s illness isn’t going anywhere so neither are we. More than ever before, we need help to make the RHCYP more than a hospital for Rory and generations of children to come. Please consider making a donation, volunteering or taking part in one of our fantastic fundraising events.”

ECHC has also provided funding of over £3 million towards the new hospital’s innovative Art and Therapeutic Design Programme; the largest integrated programme of its kind in a children’s hospital setting in the UK.

To donate now to ECHC’s More Than A Hospital appeal, visit the charity’s website.

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