Roald Dahl's Marvellous Children's Charity on the partnership between charities to help children and families
To mark World Encephalitis Day today, Roald Dahl's Marvellous Children's Charity guest blogger is Debbie, whose daughter Olivia has encephalitis.
Debbie is looking forward to the launch of a new e-learning project that Roald Dahl's Marvellous Children's Charity is supporting with the Encephalitis Society.
My daughter Olivia (pictured above) was five years old when she first contracted encephalitis. It was the most horrific, frightening time of our family’s life.
Olivia was in hospital for six months. She developed seizures and had to spend a lot of time in intensive care. When she left hospital, Olivia had learning difficulties and epilepsy amongst other conditions. Her
life had changed forever.
Olivia is a fighter who never gives up which is extremely good as she has recently had a relapse with encephalitis. Her new diagnosis is NMDAR Encephalitis (an autoimmune type of encephalitis).
At the moment Olivia is well and working hard to get up to date with the school work she missed while in hospital. She needed specialist teaching to help her regain her past knowledge and to learn new things.
I first contacted The Encephalitis Society in 2005. In 2009 I become the South East Regional Representative Volunteer, providing information and support at other parents in this area. I have been involved with the e- learning programme funded by Roald Dahl's Marvellous Children's Charity from the beginning. I took part in the questionnaire, the focus group and the pilot e-learning module.
I am very passionate in wanting to help parents and carers to understand encephalitis, its effects and especially the impact on a child’s learning.
The modules provide very useful information, answer
many important questions and signpost to other agencies who may be of help at different stages of recovery. As a parent I feel I can never get enough information, help or support regarding Olivia's life as there are so many stages in a child’s life when their difficulties may show as their brain matures. But I remain forever hopeful for her future.
The e-learning project is set to be launched next month by the Encephalitis Society. This project is one of thirteen projects currently supported by Roald Dahl's Marvellous Children's Charity as part of the Family Resilience Programme.