On Saturday 20th September 2025, we are hiking the Seven Hills of Edinburgh which is a one-day hike covering 27km and 700m elevation, starting at Carlton Hill and finishing at Arthur's Seat. This charitable walk is in memory of Otto George Malone. Otto sadly passed away in July 2021 at the age of 4 months due to complications from mitochondrial disease - a rare and incurable genetic disorder. His parents (Ami and Danny) along with their close friends and family are raising money for the Lily Foundation. The Lily Foundation helps increase awareness and fund research on mitochondrial disease and is critical in advancing medical science and supporting affected families. Please read further below for Otto's full story.

Hikers include:

Ami & Danny Malone, Jade Malone, David & Rachel Farries, Liv & Will Ford, Robyn Henderson, Debs Laurie, Carl Kimber, Craig Maxwell, Ellie & Sean Melody, Charley & Chris Novis, Anne Smith, and Chris Wilson.

Thank you for your support. Ami and Danny.

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Since his birth in March 2021, Otto had various and persistent medical issues, including a complete inability to swallow, which were undiagnosed or simply misdiagnosed. Following his birth, Otto and his parents stayed in Newcastle's RVI Hospital for three weeks, which yielded no answers. Following this, Otto and his parents were temporarily discharged as medical investigations continued on an out-patient basis. A seven-week period followed at home with the occasional medical appointment or odd overnight stay in hospital. This fleeting period at home was in hindsight the most cherished and invaluable time Otto and his family spent together.

During these seven weeks at home, Otto smiled for the first time (and then wouldn't stop smiling), met his grandparents and wider family outside of a hospital environment, had a belated newborn photo shoot, learnt to love his bouncy chair with its vibration setting maxed out, decided he preferred his parents' bed over the side-sleeper, and got the knack of pooping just as his dad started work at 9am (unlucky Ami). Despite the medical checks and hospital appointments going on in the background, these seven weeks spent watching and nurturing Otto's growth and development were the most rewarding and cherished experiences Ami and Danny had the pleasure being part of with Otto.

Unfortunately in late May and early June 2021, Otto began to show severe signs of ill health. After a protracted period (re)visiting the RVI's A&E and GP with no success, with doctors insisting Otto was merely dealing with reflux, Otto suffered significant heart and multi-organ failure on 4th June. Otto was belatedly admitted to Newcastle's Freeman Hospital paediatric intensive care unit (PICU) in the early hours of 5th June 2025 - but not before his parents were advised to say their final farewells in case Otto did not survive the short ambulance trip from the RVI.

At the Freeman Hospital, Ami and Danny were soon to find out that their cheeky and happy little baby boy was in a medically induced coma and being kept alive by an ECMO machine which externally supported his heart, lungs and kidneys. Additionally, Otto required the assistance of a ventilator, peritoneum dialysis and a multitude of drugs (adrenaline, milrinone, morphine, ketamine, plus others) to regulate heart rate, manage pain, offer sedation etc. Despite being stable on ECMO, it was made clear that Otto's situation was dire and his life was very much in the balance. It was simply a matter of taking each day as it comes whilst the clinical picture was being formed.

The next rollercoaster six weeks that followed in the PICU ward involved Otto advancing off the ECMO machine, having an unsuccessful trial being medically managed, CT scans, echo scans, chest x-rays, muscle biopsies, genetic testing and having a surgical procedure to implant a left ventricular assist device (LVAD), otherwise known as a "Berlin Heart", with the hope of progressing in order to be suitable for a heart transplant in 1 - 2 years’ time. All the while, Ami and Danny were living on-site at the Freeman Hospital and routinely staying by Otto's bedside from 10am to 11pm, subject to Covid restrictions and enforced quarantined (no lockdown Partygate for us).

Shortly after the surgery to implant the LVAD, Ami and Danny were informed that Otto's muscle biopsy results revealed that Otto has a Complex 1 deficiency caused by mitochondrial disease. A disease which when identified in newborns with multi-system failure is significantly life-shortening, progressive and ultimately incurable. After many painstaking discussions, the decision was reached to transfer Otto to St Oswald's Hospice on 20th July.

On 20th July at 16:30 and in the relaxing surroundings of St Oswald's hospice, with the exception of sedatives and pain management drugs, Otto's treatment was withdrawn. Finally, Otto was free of the obtrusive ventilation tube and tapes across his face, LVAD pipes and the kidney dialysis, all of which had been a source of discomfort for six weeks. At his parents' request, Otto's nasogastric tube (which had been present since Otto was first born) was also removed so that they could fully see his lovely face.

Otto George Malone, born 24th March 2021, sadly died on 21st July 2021 at 17:00, 24.5 hours after his treatment was withdrawn. Otto was surrounded by his loving family and in the embracing arms of his parents, Ami and Danny Malone, when he peacefully passed away.

Otto's life has sadly ended but hopefully his story can inspire positive action. The Lily Foundation are driving the research on mitochondrial disease and will inevitably be a pillar of support for Ami and Danny going forward.