Listen to an audio version of Robert’s story here:
I am writing the answers not on Eléonore’s behalf but from my perspective as I see and know her.
Eléonore was born with a very rare genetic disorder. There is no evidence that her condition is hereditary nor was it a condition that could be detected in a foetal examination. In other words she appeared as a complete surprise. And she was born in France during our one year stay there.
As a result of her genetic disorder Ellie has severe learning disabilities and frequent unpredictable epileptic seizures. She is also deafblind which means she is visually and hearing impaired. Ellie always needs two support workers to accompany her when she goes out
Ellie was born into and raised by a happy and stable family. We were given excellent support and advice in her early years. Ellie got used to staying away from her family (on holidays, respite care and college) so she grew in independence and a large circle of people got to know and understand her character and needs.
Ellie is physically strong and strong-minded and enjoys being in company. She likes being out and about, travelling on buses and trains, listening to music and chatting.
Whenever Ellie is out and about: in shops and cafés or on public transport, anyone who stares at or watches her just smiles. She has the power to make people happier.
When Ellie was just two years old, Robert wrote an article in The Independent about her. To read it, click here