Nearly £2000 raised by family of Highgate Rett Syndrome sufferer at Beatles-themed fundraiser
Reverse Rett foundation founders Rachael and Andy Stevenson (left and centre) with Hazel Beiny. Picture: Siorna Ashby - Credit: Archant
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.
Lotta's dad, Duncan Beiny (AKA DJ Yoda) with her sister Dolly. Picture: Siorna Ashby - Credit: Archant
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.
Lotta Beiny, 10, at the fundraiser. Picture: Siorna Ashby - Credit: Archant
“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.
Most Read
- 1 Five jailed after 'cold blooded' murder of Enfield father
- 2 Hampstead Town's first Labour councillor stands down weeks into office
- 3 Crouch End pub ransacked and charity money stolen
- 4 5 of the best things to do with kids in north London
- 5 Olympic ace opens Highgate primary school's new running track
- 6 Walking book club: Hampstead Heath, Death and The Penguin
- 7 Cartoonist creates celebrity tube stops
- 8 7 of the best Chinese restaurants with delivery in north London
- 9 Renaissance painting discovered in pensioner's bedroom sells for £255k
- 10 Highgate pub landlords to appeal restrictive licence approval
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.
Hazel Beiny with the poster. Picture: Siorna Ashby - Credit: Archant
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.
Children and Adults alike at the fundraiser. Picture: Siorna Ashby - Credit: Archant
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.”
