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.
Hazel, who worked for the Association of Jewish Refugees, started fundraising at her home in Chesterford Gardens by holdings talks and dinners. She did so well that she was appointed fundraising coordinator for the charity.
On Sunday afternoon, Hazel and 100 others raised money at the British Legion in Muswell Hill with a Beatles singalong and raffle.
Businesses up and down the Broadway also donated gifts for a raffle. The music was provided by Muswell Hill group Al’s Little Singers, who provide music classes for toddlers.
“It was lovely,” Hazel said. “They played all the Beatles songs that children like, as well as Hey Jude which was really good.
“We’re also really grateful to all the shops who donated prizes, which included the supermarkets and lots of the independent stores.”
It’s hoped the money will help fund further research into gene therapy, with the treatment already identified as a cure.
She added: “There’s no Rett doctor or Rett clinic. We think a cure is only a few years away, but they need the funds for it.”
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