No parent should ever have to hold their child for the final time, as they take their last breath. No parent should ever have to bury their child. According to the latest British data in 2017 on child bereavement, 6,608 babies and children under 5 years old died—that is more than 18 every day. 869 school-aged children died in 2017, making a total of 7,353 babies, children and young people under the age of 18 who died that year.
This is a story of a real family, a real child and real lives. UK Column is very grateful to Tracey for bringing us Ethan’s story. Tracey bravely allows us into the life and passing of her beautiful son Ethan, whom she lost when he was just eight years old. Ethan’s story and legacy will highlight the plight of children, and their parents, who appear to be trapped into a system (the NHS) that they can’t escape from. Tracey describes her lonely journey, fighting for her son and challenging those who controlled this.
Ethan arrived in the world on 4 September 2013, a beautiful miracle baby, a very welcome and long-awaited addition to the family for his devoted mum and dad. This interview with his mother Tracey is dedicated to Ethan, who sadly passed away on 23 January 2022.
Ethan’s short life was full to the brim with love, smiles and happiness. He was a kind child, full of personality, who was always delighted to be in the company of others and hit all his developmental milestones on time, up until 18–24 months old. Ethan enjoyed playing with all his toys and was very sociable. As well as chocolate and all the other treats that children love, Ethan adored trains. Thomas the Tank Engine was a great favourite, with Bing, Peppa Pig and others, and a favourite toy was Mr Owl. One of the highlights of his short life was a trip at the front of the train on his fifth birthday. Hats off to Mersey Travel, who made that such a memorable and treasured day that will never be forgotten.
Tracy describes Ethan as a courageous, strong baby who showed no early signs of any medical conditions to be concerned about. However as time went on, a delay in speech and coldness of his hands was noticed. Tracey sought medical advice. Ethan was diagnosed on the autism spectrum—the first of many diagnoses still to come, though this was unbeknown to them at the time.
At the age of three, Ethan, whilst visiting his grandparents, very suddenly experienced his first seizure (fit). We hear from Tracey how medical professionals dismissed initial concerns. As the seizures became alarmingly frequent and severe, experts diagnosed anoxic seizures, a type of fit usually triggered by a temporary cutting-off of the supply of blood to the brain, triggered by unexpected stimuli. A prescription for sodium valproate was issued; this was the first choice of drug to help control the seizures. Tracey was never given any information on the dangers of sodium valproate, neither was she given a choice.
Sodium Valproate is known to cause birth defects and neurodevelopmental disorders, and can have multigenerational serious consequences.The regulatory requirements for ‘safe use’ were not being consistently followed and have now been reviewed by the MHRA. No one under the age of 55 years old should be started on sodium valproate unless two specialists independently decide there is no other treatment.
In December 2022, Dame June Raine, CEO of the Medicines and Healthcare Products Regulatory Agency (MHRA), at a Parliamentary Select Committee, said:
I come back to the Commission for Human Medicines advice: no-one should be receiving valproate unless there is no other effective alternative.
Tracey and Ethan were never given any choice.
Ethan continued to have regular and serious fits, but instead of reducing the dose of sodium valproate, it was increased, despite serious concerns from mum. Due to the deterioration in Ethan’s condition, who was by now exhibiting a pattern of breakthrough seizures, a new diagnosis of Dravet syndrome was made. Medication was never considered as a potential cause of Ethan’s deterioration, despite Tracey’s constant concerns. However, it was decided to wean him off sodium valproate and switch to Keppra, another anti-convulsant.
Tracey describes how she was prevented from accessing alternative medicine and complementary therapies. She and Ethan had become locked within the world of allopathic medicine, where there was no choice, not even a mother’s choice. Ethan’s life was in the hands of the NHS and Big Pharma. Tracey recounts her harrowing journey, with no support from professionals, as she stood her ground, alone, challenging the ‘experts’, and those responsible for prescribing cocktails of dangerous medications. Branded as ‘unvaccinated’, Tracey found herself in a hostile medical environment.
Determined to find a holistic alternative, Tracey tells us of her many endeavours to obtain a prescription for medical cannabis to help Ethan. Her campaign took her to the BBC Victoria Derbyshire Show, the UK Government, Parliamentary Health Committee Chairman Jeremy Hunt, and eventually abroad. We hear how Tracey travelled with Ethan to the Netherlands in search of an expert consultant neurologist and later how she managed to obtain a prescription and the medicine she had been hunting for so long, including a description of the lengths to which she had to go to get it. Tracey reveals how, with social workers knocking on her door, she always felt as though she was being scrutinised and assessed.
Further genetic tests, carried out at Great Ormond Street Hospital, London, revealed Ethan was suffering from Batten disease, which is a rare group of nervous system disorders. Ethan was diagnosed with CNL2, an ultra-rare neurodegenerative condition. Late infantile Batten disease (CLN2) occurs in children, typically manifesting at ages 2 to 4, and is characterised by loss of vision, loss of motor and intellectual skills, and seizures, and life expectancy with it is around 8–12 years. Eventually, children with this condition will depend on around-the-clock care. There are currently only between 30 and 50 children in the UK with CNL2. Tracey and Ethan’s dad were told this devastating news in an unfriendly clinical setting by Alder Hey Hospital, Liverpool, and were warned of the prognosis with an ice-cold delivery.
In early January 2022, Ethan became very unwell and was having very frequent seizures. He was admitted to Ormskirk Hospital. After the protocols failed to control the seizures, it soon became apparent that Ethan required specialist interventions, and he was sedated with Midazolam and morphine and placed on a mechanical ventilator. It was agreed that he should be transferred to Alder Hey Children’s Hospital via 999 ambulance. Ethan and Tracey were PCR tested for Covid–19, result negative.
However, because Ethan’s dad, although already isolating, had tested positive for Covid–19, Tracey was not allowed to travel with her darling son to Alder Hey and was excluded from visiting him for four days. Tracey was not informed of many of Ethan’s treatments during those days, which included a blood transfusion which was given with no permission or consent. We learn, too, that Ethan’s positive PCR test was a false positive, and that mother and son should never have been separated or isolated.
We learn of the pressures Tracey faced when told by doctors that there was no hope left, no alternative other than to switch the life support system off. She was constantly asked if she had made a final decision—the most difficult decision for anyone to take, least of all on a child. The way with which this final act was done was unbelievably cruel, and to some perhaps unbelievable.
On 23 January, Ethan quietly slipped away, peacefully in his mum’s arms.
A little over a year on, Tracey has now submitted over 60 complaints to both hospitals, with 34 replies received to date.
Tracey’s fight for justice goes on, determined as she is to make a difference for children with serious, life-changing and life-ending diseases, Tracey calls for an alternative to allopathic medicine, so that parents no longer feel they are trapped in the wrong system.
Tracey calls for a holistic medicine service where a choice of treatments is offered and informed choices and decisions can be taken. She shares with us the vast array of powerful pharmaceutical drugs that Ethan was made to take, and asks parents to look at the alternatives first. She also calls for psychological support to be offered to every parent who tragically finds themselves caring for a very sick child and in a similar position, fighting the system.
Our heartfelt condolences to all of Ethan’s family. We would like to thank Tracey for her bravery and determination in sharing Ethan’s story. His legacy will live on forever in the countless hearts he touched during his life and will continue to touch since his passing.