West Lavington garden party raises £1,000 towards charity target
9:40am Wednesday 9th July 2014 in By Anne 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 music and food.
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.
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.”
Comments are closed on this article.