A ten-year-old girl who suffers from a rare genetic condition is helping raise awareness of ‘Jeans for Genes Day’ – a fundraising initiative by charity Genetic Disorders UK.
Not many ten-year-olds could recognise Benny Hill, but when Poppy Blewett-Silcock hears the comedian’s song, Ernie (The Fastest Milkman in the West) first released in 1971, she always laughs. “She has a total naughty little giggle,” says Tymandra, Poppy’s mum who lives with her daughter and husband Craig in Machen.
“She’ll laugh at rude noises and people tripping up in the street. Having Poppy has made me realise how much laughing is a natural part of human nature. She’s made me think differently.”
Poppy has Warburg Micro Syndrome (WMS), a life-threatening rare genetic condition. It causes blindness and complex special needs.
Children affected by WMS need 24-hour care. Poppy is in a wheelchair, has leg splints and is fed through a tube. She is often in and out of hospital with stomach problems. Poppy can’t yet sit, walk or talk. But with the care and support of her family, which includes half-brothers Graham, 21, and Andrew, 20, who live nearby in Bristol, she is making progress each day.
“When Poppy was diagnosed, I wondered what I’d done wrong but it could happen to anyone as the condition is down to a gene mutation,” says Tymandra, who used to work as a consultant in renewable energy. “I’ve changed my perceptions about disability. It brings out the worst and best in society – and that humbles you.”
To raise awareness of children with special needs and support other parents affected by conditions like WMS, Tymandra set up the charity Parents of Partially Sighted and Blind Youngsters (POPSY) which will benefit from funds raised on this year’s Jeans for Genes Day – held on September 20.
“I set up the charity to keep me positive and as an attempt to empower others who may feel out of control or are not sure what to do next and who feel alone,” says Tymandra. “We’re delighted that money from this year’s Jeans for Genes Day will support our work.”
Setting up POPSY is allowing Tymandra to put the kind of support she wanted when she got Poppy’s diagnosis in place. The charity works with families with children who are blind, have special needs and life-limiting conditions. They organise events and trips that bring families together and offer support and information.
This year, the charity will receive £7,000 from money raised by the annual event which urges people to wear jeans for the day.
Tymandra has some concerns for the future. She wonders what might happen to Poppy if her and Craig weren’t here or able to care for her, or if Poppy got very poorly. Being involved with POPSY and talking to other parents through the charity’s or WMS Facebook groups helps her and Craig deal with some of these issues.
She hopes that research into WMS speeds up and that Poppy is as healthy as she can be for as long as possible. Tymandra is also busy planning a trip for POPSY families to Florida so children supported by the charity can swim with dolphins.
“We want to do what we can, while we can and enjoy the very special time we spend with Poppy,” says Tymandra.
On Thursday September 26, Caerphilly Municipal Club will hold their annual charity fund raising evening – this year in aid of POPSY.
Tickets are priced at £5 per person and are on sale at the Municipal Club, in Market Street, for members and guests. All proceeds from the evening will go to the POPSY 2014 Dolphin Swim Appeal.
The evening will include three hours of live entertainment, a raffle and a charity auction.
Local businesses are supporting the night with donations coming from the Red Kite, Yankee Doodles and The Laundry Box.
• For more information about POPSY visit www.popsy.org.uk, for more about Jeans for Genes Day visit www.jeansforgenesday.org