A mum whose daughter was struck down with a potentially deadly brain condition is helping raise awareness of Childhood Encephalitis across the UK.
Petrina Sill runs the Eden Dora Trust which funds research into Childhood Encephalitis as well as highlighting what can be a debilitating and life-changing condition.
Encephalitis is an inflammation of the brain that can be caused either by a viral infection or by the immune system mistakenly attacking the brain.
It is more common than people think and affects thousands of children every year in the UK.
The charity is named after Petrina’s daughter, Eden, who was left with an Acquired Brain Injury (ABI) after Encephalitis in 2011.
Petrina had kept her daughter, then aged six, off school because she seemed poorly and had been complaining of aching legs and the odd headache.
The mum thought Eden was “off colour” and didn’t think much more of it. But their lives were soon to be changed forever.
The mum-of-two said: “We were just about to start watching Barbie the Movie. Suddenly, Eden went very stiff and had a massive seizure. I could see in her eyes just how terrified she was. Then she fell completely unconscious.”
She was rushed to Sheffield Children’s Hospital where lots of different tests were done. A quick-thinking consultant, who walked past, started her on medication which fights encephalitis.
Petrina said: “After what seemed like eternity, Eden regained consciousness and initially she couldn’t see, hear or speak at all. She was hallucinating and didn’t know who anybody was. It was horrific for Eden and us. Eventually the medical team managed to stabilise her condition. But all she could say for the longest time was “mmm”, then eventually “mummy”, but she didn’t know who mummy was. She just knew who she wanted. So to her, everybody was mummy. It was so very scary and for a long time we thought we’d lost her, to some degree we did, because the child that came out of her unconscious state was a completely different child.”
Eden later regained her sight and recognised her mother. Petrina knew nothing about Childhood Encephalitis back then and was determined to find out more.
She said: “Due to the lack of awareness of Childhood Encephalitis, both within the medical profession and the non medical profession that is often when you can get non or misdiagnosis. If you are not diagnosed quickly enough and you are not given the correct medication quickly enough, then there are dire consequences.”
Rehabilitation can be a long process. Eden had to learn how to speak again and was schooled by outreach teachers in hospital and at home.
She then went to school part-time. Eden, now 14, has just gone back to school full time.
The Eden Dora Trust believes schools are often not equipped enough to deal with the complexities of a child with an Acquired Brain Injury. The children can often suffer from cognitive fatigue. They often have to think incredibly hard about completing seemingly simple tasks most people take for granted, like how to get from A to B.
Her daughter’s plight and Petrina’s own experiences as a parent inspired her to set up the Eden Dora Trust (EDT) five-years-ago.
The EDT was established with the aim to raise desperately needed funds to provide training for adults working with children affected by Encephalitis and Acquired Brain Injury. Other ambitions were to fund research in to Childhood Encephalitis and help families and carers when they need it most.
Petrina said: “I didn’t want other families, carers and siblings to be in the same position I found myself in. It is the most-devastating life-changing experience and so desperately isolating.”
Since 2014 The EDT has gone from being largely a one-woman band to a charity who can call on help from a team of experts. Its advisory panel features a wealth of experienced consultants in different fields, paediatric nurses and therapists whose knowledge can be drawn on to help tackle a raft of problems.
Petrina has had some heart-warming feedback from people she has helped all over the country.
One mother said: “The support from people who have been there, The Eden Dora Trust for children with Encephalitis, is genuinely invaluable. It’s not a faceless charity, you know their knowledge is first-hand, and it means the world to know that there are people there for you.”
Petrina, from Sheffield, continues to work tirelessly for the EDT, which has just published a handbook called ‘Getting to know Childhood Encephalitis’. She added: “I work 24/7 for the charity but it is so rewarding because I know how many children and families we are helping. For that reason it spurs me on to continue.”
The EDT also funds free workshops to help educate the educators. The Eden Dora Trust is raising funds to not only continue its desperately needed work, but also for a new initiative to provide more support and education for professionals within schools. It wants to enable the school to support a child with an Acquired Brain Injury in the right way. More than 40,000 children are diagnosed with an ABI every year in the UK, and for most children their rehabilitation is school.
The Eden Dora Trust is the only charity in the UK specifically for children with Encephalitis. They also need more support from the corporate sector and the community to help fund its vital work.
For more information see: edendoratrust.org or email: firstname.lastname@example.org.
The charity is also Facebook and on Twitter: @EdenDoraTrust. It uses the hashtags #ChildhoodEncephalitis, #EDT and #ABI.