July 22nd, 2017: The Eded Dora Trust was founded on the first World Encephalitis Day on February 22nd 2014 by Petrina, mother of then 9 years old Eden, who had been recovering from encephalitis.
Encephalitis is a brain inflammation caused by viral or bacterial infection or by autoimmune disease, which often follows a mild infection. The disease can affect anybody at any age and in fact there are over 6,000 new cases of encephalitis per year in the UK alone. The initial symptoms of encephalitis are flu-like and are often overlooked. At a later stage (hours or days later) encephalitis can cause seizures, inability to see or speak, aversion to light, high temperature, and even loss of consciousness. Encephalitis can be fatal if not treated promptly. Treatment consists of targeting the cause of the disease with anti-viral or antibiotic medications and in managing the negative effects of the disease on brain function; for example with anti-seizure medications. The promptness at which the disease is treated is essential for a good outcome, therefore patients are often treated with both anti-viral and antibiotic medications at the same time, even before the cause of encephalitis is clearly established.
Even with the most aggressive and timely treatments available, encephalitis is likely to cause some loss of brain function. Sometimes, the loss of brain function is minor causing the affected individual to become “mentally tired” especially early on after recovering from the disease. Other times the consequences are much more severe and things like recurring headaches, difficulties with memory, concentration and balance, mood swings, aggression and clumsiness are reported. In some cases the individual can also develop epilepsy.
Eden was 6 and half years old when on March 2nd 2011 she developed encephalitis. Her case began with flu-like symptoms until she had a massive seizure that brought her to the hospital. Her case was severe and caused her to initially lose consciousness and then, even after regaining consciousness, to lose the ability to speak and see for days. Her recovery has been slow and tasks that took her one hour now take her an entire day. In fact Eden has been left with an acquired brain injury (ABI) that affects her ability to think and function. Her mom Petrina states on the Eden Dora Trust charity website “Eden looks very much the same as she used to and nearly 3 years on one or two aspects of her personality are now as they used to be. But she is very different.” These words really capture what it means to live with the aftermath of encephalitis.
The mission of the Eden Dora Trust charity is to provide support to children with encephalitis and their family, to raise awareness of the disease and to support scientific research into the causes of this disease. The charity slogan is SPEAK: Support, Provision, Education, Awareness, and Knowledge.
The charity lists prominent people in the entertainment industry, sport and business as patrons including singer/song writer former One Direction member Louis Tomlinson. Louis has been a passionate supporter of the charity from its inception and has developed a sincere friendship with Eden. Credited from The Eden Dora Trust website Louis states “Despite her illness Eden is a truly incredible little girl and we have become great friends 🙂”. In our article published on June 11th, 2016 we wrote about Louis’ participation to the Eden Dora Trust charity tea held on October 30th, 2015.
Pictures credited to the Eden Dora Trust website.