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31/03/2020

Leicestershire Live: Girl, 10, with rare 1 in 12,000 condition ‘making the most of life’

Georgia Wainwright is 10 years old and has been diagnosed with an extremely rare condition that means she cannot walk or talk.

Rett Syndrome is extremely rare. It is a neurological condition that affects around one in 12,000 people.

The condition, most common in girls, is extremely difficult to diagnose, so much so that Georgia’s parents, David, 44, and Louise, 45, were told it would be more likely they wouldn’t be able to diagnose her with anything at all.

“It leaves her prone to breathing difficulties, scoliosis and she has a complex immune system,” said her dad.

“She also has epilepsy and has had 100s of seizures since November 2018, but only a handful have been bad.

“Normally they are self-resolved unless she clusters, which is when she has to go to the hospital for recovery medication.

“But after that the next day she’s back to her normal self.

“Out of the hundreds she has had there have been only a handful where we have been really worried.”

“If we give her the choice of three DVDs she tells us which one she wants to watch using that,” her dad explains. “She makes choices about what she would like to eat using pictures.

“We can understand what she’s trying to say, we know when she’s happy and when she’s sad, we just have to be patient with her.

“Apart from when she’s hungry, she’s a very happy young girl.

“She’s so thoughtful and she has a very cheeky sense of humour.

“She takes everything on in a very positive manner, she’s very popular in her class at school.”

Georgia loves going to watch the Foxes and has a season ticket at the King Power. She also tries to get to as many away games as she possibly can with her family.

“When we turn right to go to our seats in front of the family stand her face just lights up,” added her dad.

“If you ask her who her favourite player is she says either Jamie Vardy or Jonny Evans.”

To help cope with the postponement of the football season her dad sings a Leicester song a day to Georgia and posts the videos on Twitter.

He is planning on singing a different song every day for the entire 84 days the family is in self isolation.

The world of sport has played a big part in the family’s life. Her dad is currently in his final year of studying sports journalism at the University of Derby and writes for publications within boxing.

And his connections that have helped to spread the word about what is a condition where still little is known.

You can read the full article here