Parents do not have to hold their child until the very end when they take their last breath. Parents never have to bury their children. The latest data on child bereavement in the UK in 2017 shows that 6,608 infants and children under five died, more than 18 every day. In 2017, 869 school-age children died, bringing the total number of infants, children and youth under 18 who died in the same year to 7,353.
This is a story of real families, real children, and real lives. The UK Column is very grateful to Tracy for sharing Ethan's story. Tracy bravely takes us through the life and death of her beautiful son Ethan, who she lost at just 8 years old. Ethan's story and legacy will highlight the plight of children and their parents who are seemingly trapped in a system from which there is no escape. Tracy describes a lonely journey to fight for her son and challenge those who control it.
Ethan came into this world on September 4, 2013. A beautiful miracle baby and a very welcome and long-awaited addition to the family to a devoted mom and dad. This interview with his mother Tracy is dedicated to Ethan, who sadly passed away on January 23, 2022.
Ethan's short life was filled with love, laughter, and happiness. He was a kind and full of personality child who always enjoyed being around others and achieved all his developmental milestones on time from 18 to 24 months of age. Ethan loved playing with toys and was very sociable. Like chocolate and all the other treats kids love, Ethan loved trains. Thomas the Tank Engine was very popular with Bing and Peppa Pig, and his favorite toy was Mr. Owl. One of the highlights of his short life was traveling in front of a train on his fifth birthday. Hats off to Margie Travel for making this day such a memorable and special day that I will never forget.
Tracy describes Ethan as a brave, strong baby who showed no early signs of any worrying medical conditions. However, over time, I noticed a delay in speech and coldness in my hands. Tracy sought medical advice. Ethan was diagnosed with autism spectrum disorder. This was the first of many yet to be diagnosed, but they didn't know it at the time.
At age 3, Ethan suddenly experienced his first seizure (seizure) while visiting his grandparents. We hear from Tracy how medical professionals dismissed her initial concerns. The attacks became so alarmingly frequent and severe that experts diagnosed them as anoxic attacks. An anoxic seizure is a type of seizure that is caused by a temporary interruption of blood supply to the brain, usually caused by an unexpected stimulus. prescription for Sodium valproate Published. This was the first choice of medication to help control seizures. Tracy was given no information about the dangers of sodium valproate and was given no choice.
Sodium valproate is known to cause birth defects and neurodevelopmental disorders, which can have serious consequences over several generations. Regulatory requirements for “safe use” have not been consistently followed and are currently being reviewed by the U.S. government. MHRA. People under the age of 55 should not start taking sodium valproate unless two experts independently determine that there is no other treatment option.
In December 2022, Dame June Laing, CEO of the Medicines and Healthcare products Regulatory Agency (MHRA), spoke at a lecture. parliamentary special committeesaid:
I return to the advice of the Human Medicines Committee. No one should receive valproic acid unless there are other effective alternatives.
Tracy and Ethan were given no choice.
Ethan continued to have severe seizures on a regular basis, but the dose of sodium valproate was increased instead of reduced, despite his mother's serious concerns. As Ethan's condition worsened and he was exhibiting a pattern of spontaneous seizures at this point, the new diagnosis was Dravet syndrome Made. Despite Tracy's constant concern, medication was never considered as a potential cause of Ethan's worsening symptoms. However, it was decided to discontinue administration of sodium valproate and switch to sodium valproate. Keppraanother anticonvulsant drug.
Tracy describes how she was prevented from accessing alternative and complementary medicine. She and Ethan were trapped in a world of allopathic medicine where they had no choice, not even their mother's choice. Ethan's life was in the hands of the NHS and big pharmaceutical companies. Tracy shares her harrowing journey of standing alone, without professional support, and challenging the “experts” and those responsible for prescribing a dangerous cocktail of drugs. Stigmatized as “unvaccinated,” Tracy found herself in poor medical conditions.
Determined to find a holistic alternative, Tracy shares how she went to great lengths to obtain a medical marijuana prescription to help Ethan. Her campaign took her to the BBC Victoria Derbyshire Show, the UK Government, Parliamentary Health Committee Chair Jeremy Hunt and eventually overseas. How Tracy traveled to the Netherlands with Ethan in search of a specialist consultant neurologist, and then how she was able to obtain a prescription and the medication she had been looking for for so long. Listen, including an explanation of the lengths she had to go. get it. Tracy reveals that she felt constantly scrutinized and judged as social workers knocked on her door.
Further genetic testing at London's Great Ormond Street Hospital revealed that Ethan was suffering from the following disease: Batten diseasewhich is a rare group of neurological diseases. Ethan was diagnosed with CNL2, an extremely rare neurodegenerative disease. Late infantile Batten disease (CLN2) occurs in children, usually with onset between 2 and 4 years of age, is characterized by loss of vision, loss of motor and intellectual abilities, and seizures, and has a life expectancy of approximately 8 to 12 years. Eventually, children with this condition become dependent on 24-hour care. There are currently only 30 to 50 children with CNL2 in the UK. Tracey and Ethan's father was told the shocking news in an unfriendly clinical setting at Liverpool's Alder Hey Hospital and warned of the prognosis of an ice-cold birth.
In early January 2022, Ethan became very ill and had frequent seizures. He was admitted to Ormskirk Hospital. After protocols failed to control the seizures, it soon became clear that Ethan needed professional intervention, and Ethan was sedated with midazolam and morphine and placed on a ventilator. It was agreed that he would be taken by Ambulance 999 to Alder Hey Children's Hospital. Ethan and Tracy underwent PCR tests for the new coronavirus infection (Covid-19), but the results were negative.
However, although Ethan's father was already in isolation, he tested positive for Covid-19 and Tracey was not allowed to travel to Alder Hey with her beloved son and was unable to see him for four days. were also excluded. Tracy was not informed at the time of much of Ethan's treatment, including blood transfusions, which were performed without permission or consent. We also learn that Ethan's positive PCR test was a false positive and mother and child should never have been separated or isolated.
We learn about the pressure Tracy faced when her doctors told her there was no hope and they had no choice but to switch off her life support machine. She was constantly asked if she had made a final decision. It was the hardest decision for anyone, especially a child. The way this last act was done was incredibly cruel and perhaps unbelievable to some.
On January 23rd, Ethan passed away peacefully and quietly in his mother's arms.
More than a year later, Tracy has now filed more than 60 complaints with both hospitals and received 34 responses to date.
Tracy continues her fight for justice, determined to make a difference for children with serious, life-altering and life-ending illnesses. Tracy is seeking medical alternatives to allopathic medications so that parents no longer feel like they are falling into the wrong trap. system.
Tracy wants comprehensive medical services that provide treatment options and allow her to make informed choices and decisions. She shares with us the vast number of powerful medications Ethan was put on and asks parents to consider alternatives first. She also calls for psychological support to be provided to all parents who are caring for tragically seriously ill children and who are in similar positions battling the system.
My deepest condolences to Ethan's family. I would like to thank Tracy for her courage and determination in sharing Ethan's story. His legacy will live forever in the hearts of the countless people he touched during his lifetime, and will continue to touch even after his death.
