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14/02/2019

Nearly £2000 raised by family of Highgate Rett Syndrome sufferer at Beatles-themed fundraiser

The family of a girl left “locked in” by a rare syndrome has raised more than £1900 for the charity trying to help fund a cure.

Hazel Beiny’s 10-year-old granddaughter Lotta was diagnosed with Rett Syndrome when she was two years old.

Rett Syndrome is caused by a gene fault on the X chromosome. Sufferers grow up healthily but then start to regress when in early childhood.

Slowly they lose their ability to walk, talk, or use their hands. The syndrome isn’t passed on genetically, and usually affects girls. 2,500 people are affected by it in the UK.

Hazel said: “We thought she was autistic initially as she wasn’t able to talk but then she got her diagnosis. It was awful as she was my son and his wife’s first child, so we just didn’t know what to do. It changed the whole family dynamic.

“The worry resonates throughout the family. We all worry about how each other is coping.”

Lotta now needs round the clock care, and is fed by a tube because of digestive problems. She lives with mum and dad Bianca and Duncan Beiny, otherwise known as DJ Yoda, and her 5-year-old brother and 3-year-old sister in Dartmouth Park Hill, Highgate. Because the syndrome isn’t passed on genetically, none of them have it.

Read can read the full story in the Ham&High