This is Amy. She is 14, stands 4ft 8inches tall, a mop of hair with a life of its own and a huge smile, her trademark features. This time last year she was out at a local water park in Greenock at Wavefront Leisure Complex with three of her best friends, where hours were spent on the flumes and chatting in KFC afterwards, a pretty average teenage girl’s day out. Unbelievably it was to be the last time that they saw her.

We weren’t party to the conversations that day but her family suspect it was highly likely that Amy was goofing around. They describe how ‘she really loved making folk laugh and was not afraid to make an arse of herself to do it’. Amy’s quirky sense of humour included a talent for accents gifted by her father and whip smart comebacks from her mother. Quick to smile, they recall how Amy laughed at her own jokes so hard.

What else might they have discussed? Perhaps Amy’s training to become a First Aider and her work as an ambassador with St Andrew’s First Aid. Amy was looking forward to turning 16 and becoming an Event First Aider with the added perks of attending concerts, festivals and sport events.

She heard on the day of her operation that she had been nominated for a ‘Young Volunteer of the Year Award’ which has since been renamed by St Andrew’s First Aid in Amy’s memory.

It’s perhaps true that most teenagers reflect what they know, for Amy her interest in first aid was accompanied by a commitment to raising money for Yorkhill Hospital, where she spent time as a young child, and a desire to work in a Children’s Hospital when she left school.

Amy arrived in this world, on her due date, in The Queen Mother’s Hospital, Glasgow in January 2004. About half-way through her mother’s pregnancy Amy’s parents were warned that she might not survive until birth. This was to be the first, of many occasions, where Amy had other ideas.

Amy was born with a genetic condition called Noonan Syndrome. This resulted in a number of heart problems throughout her life, and multiple opportunities to prove the medics wrong, eventually earning her the nickname of ‘the constant source of embarrassment’ at the old Yorkhill Hospital as she was always defying expectations.

Amy had her first operation, open heart surgery in March 2004. In the years that followed Amy’s list of medical conditions grew, but she took things in her stride, at her own pace and lived life to the full.

Amy was always willing to try anything once, whether that was roller blading or para gliding.

In July 2009, the Allan family was completed with the arrival of baby Ryan. Amy was a very proud big sister. She loved babies and young kids and despite only being 5 herself, was a natural second mum for Ryan.

Amy and Ryan had an amazing bond, spending hours and hours hanging out with each other, fooling around and making each other laugh. Ryan’s life will never be the same without Amy, he is struggling to come to terms with life an only child, having always had his big sister around before. Leigh hopes he’ll take some comfort from Leo, Amy’s pet tortoise, who should be a constant in Ryan’s life for years and years to come, and a reminder of how unique Amy was.

Amy loved a prank and was forever hiding and jumping out, taking years off her parents lives. She was extremely stealthy and had caught out her Mum and Dad, Leigh and Richard, and Ryan on numerous occasions. She had some great videos of scaring Ryan and she thought she was hysterical.

If you’re imagining Amy was a frail and sickly child you couldn’t be more wrong. Apart from taking tablets three times a day Amy lived a pretty average, every day life. She attended mainstream school and thrived, keeping up with her friends. Her mum recalls that her general health was excellent, apart from the odd chest infection every couple of years she had an amazing immune system and was never poorly.

As she grew Amy’s spine started to curve due to scoliosis and it was clear she needed surgery to reduce her pain and prevent it getting worse. As Amy lived in Scotland the spinal unit is in Edinburgh, and cardiac unit with specialist cardiac backup ECMO is in Glasgow. To be safe Amy was referred to Great Ormond Street Hospital for the surgery where they have spinal and cardiac teams under one roof, and the surgery could be done with ECMO on standby (GOSH are a centre of excellence for ECMO).

An extensive pre-operative assessment process followed with Amy and Leigh making trips to London on four separate occasions for tests before the operation was agreed. Amy made the most of the situation, enjoying girl’s time with her Mum, going to see Wicked, on the London Eye, tourist buses and generally enjoying what London had to offer.

On the 4 September 2018 Amy underwent successful scoliosis surgery at Great Ormond Street and was transferred to the Paediatric Intensive Care Unit post operatively. When she needed the support of the Cardiac Intensive Care Unit, who were eventually contacted at 3am the following day after she’d deteriorated, it was the first time the staff there were aware Amy had undergone surgery and might require ECMO support (the reason for her operation taking place at GOSH).

Amy’s family are incredibly concerned about the post-operative care that she received. They consider there was a series of errors, omissions, communication breakdowns and generally sub-standard treatment. Less than a month after surgery Amy died from sepsis and multi-organ failure on 28 September 2018.

Amy’s family and their legal team have been seeking answers since her death a year ago. Their initial request for the records created after Amy’s death were refused by GOSH, but the Coroner ruled that they should be disclosed. This led to the sharing of 3000 pages, including 18 versions of the complaint response containing numerous discussions between the clinicians involved about the care provided and decisions made.

Amy’s family are left with scores of questions, very few answers and many concerns about what they perceive as a cover up by GOSH. Their lives will never be the same again. They will continue to miss Amy’s company, her humour and wit, her love, affection and laughter. At the very least, they hope that her inquest next week will address their concerns and provide answers to the questions as to how and why she died.

For more information on the care Amy received please see the press release here [when available] and please feel free to attend Amy’s inquest next week.

Amy’s inquest will be heard in front of Assistant Coroner Edwin Buckett at St Pancras Coroner’s Court on Monday 2, Tuesday 3 and Wednesday 4 September 2019, starting at 10am daily.

Amy’s family are represented by Lynda Reynolds, Senior Associate at Hugh James and Edward Ramsay, barrister at 12 King’s Bench Walk.