'Beautiful' Otto George Malone sadly passed away at just four months due to complications from a largely incurable and untreatable disease.
The Newcastle couple have now opened up about their son's death as they want to ensure him memory lives on. They are now aiming to raise £10,000 to fund research into the deadly mitochondrial disease.
Ami said: "I want to keep the story of Otto alive so it can help me and Danny, it needs to be talked about, a child's death should be spoken about. I want my son to be remembered.”
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The couple from Gosforth are telling their son's story and have set a £10,000 fundraising goal as eleven cyclists will be cycling 120 miles along the Sandstone Way, from Berwick to Hexham, Northumberland, from June 3 to June 5.
The Lily Foundation helps increase awareness and fund research on mitochondrial disease and is critical in advancing medical science and supporting affected families.
Following his birth in March 2021, Otto had various medical issues which were undiagnosed, but he and his mum were discharged as medical investigations continued. Just over seven weeks followed at home where Otto smiled for the first time (and then wouldn't stop smiling), developed his social skills, and began to love his bouncy chair with its vibration setting maxed out.
But unfortunately, Otto began to show severe signs of ill health in June last year. After a protracted period of visiting and re-visiting the A&E department, Otto suffered significant heart and multi-organ failure and was admitted to Newcastle's Freeman Hospital PICU ward.
but as Otto's condition worsened the 'cheeky and happy' little baby was put in a medically-induced coma and attached to a machine that externally supported his heart, lungs, and kidneys. The 'rollercoaster' six weeks that followed involved Otto being taken off the machine, followed by many different scans and tests, and a surgical procedure to implant a left ventricular assist device with the hope of progressing in order to be suitable for a heart transplant in one and two years’ time.
All the while, Ami and Danny were living on-site at the hospital and routinely staying by Otto's bedside. Ami said: "Due to Covid, we were restricted from seeing our baby. Only me and my husband and occasionally my mum would be able to be by his side." At one point Ami and Danny were stopped from seeing their baby for three days due to someone having Covid on the ward.
Shortly after the surgery, Ami and Danny were informed that Otto's muscle biopsy results showed that Otto had a complex deficiency caused by mitochondrial disease. A disease that when identified in newborns with multi-system failure is significantly life-shortening, progressive, and ultimately non-curable.
After many painstaking discussions, the decision was reached to transfer Otto to St Oswald's Hospice on July 20 and withdraw his treatment. Ami added: "When we moved to St Oswald's Hospice, the immediate family were welcomed to see Otto for the first time. The hospice looked after us and had a place for Danny's family from Essex to stay. It was the place we could meet during Covid."
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 and the kidney dialysis. At his parents' request, Otto's nasogastric tube (which had been present since Otto was firstborn) was also removed so that they could fully see his lovely face.
Otto George Malone sadly died on July 21, 2021, 24 hours after treatment was withdrawn. He was surrounded by his loving family and was in the embracing arms of his parents when he peacefully passed away, on Ami's sister's birthday.
The couple were supported by the Lily Foundation, which is driving the research on mitochondrial disease and will inevitably be a pillar of support for Ami and Danny going forward.
See more details about the cycle and Otto’s story on the following link: www.justgiving.com/fundraising/cycleforotto
Do you holding any fundraisers, if so let us know in the comments below
