Market Lavington garden party raises £1,000 to help set up charity branch
1:25pm Tuesday 8th July 2014 in By Joanne Moore
A garden party held to help the mother of a young boy with a rare genetic disorder set up a charity has raised more than £1,000.
Konnie Newmark of Broadway, Market Lavington, was delighted with the turn out and generosity of people who spent Saturday enjoying a wide mix of music and eating BBQ food and cream teas.
She said: “I was quite overwhelmed by the support. It was wonderful.”
Mrs Newmark’s son Jai, six, is thought thought to have been the first UK child to be diagnosed with FoxG1 Syndrome.
FoxG1 affects the development of the brain. Children with it have severe development delay, cognitive disability, epilepsy, lack of speech and mobility.
Jai, who goes to Larkrise School in Trowbridge, was diagnosed with the condition when he was two-and-a-half at St George’s Hospital, London.
In America parents have created the International FoxG1 Foundation and they know of just 80 children worldwide – including seven in the UK – who have the condition.
In the UK parents have been raising money to set up a UK sister foundation. So far they have raised £3,000 and need another £2,000 to register it as a charity.
The money from Saturday’s event will go to help reach the total. Jai’s nanny Stacey Oliver, who helped organised the garden party, said: “We raised £1,000 on the day but hope this will go up to £1,500 once donations have been made by people who couldn’t attend. It was a lovely day and the weather was very good with not even a spot of rain.
“Jai and a little girl with FoxG1 were at the garden party and really enjoyed being centre of attention. In additon to raising money it also helped to raise awareness.”
Mrs Newmark, 47, who moved with Jai and her two older children from London to Market Lavington, 18 months ago, said: “Having a UK charity of the FoxG1 Foundation will raise awareness and hopefully get more funding for the research scientists to find a cure.
“There are other families out there who don’t yet have a diagnosis. We have a group on Facebook and it’s fantastic to be able to offer support.”