Family calls for help to spread Christmas cheer
Funds are low as plans are made to welcome Rett Syndrome sufferers
Cassie Twohigg, of Narcot Road, Chalfont St Giles, suffersfromRettSyndrome, and for the past three years her parents, Mick and Tracie, have organised a get together for other sufferers and their families from all over the UK. Last year the party attracted 15 children and their families, and the Twohiggs expect to host 20 to 25 this year.
But due to a deterioration in Cassie’s condition, Mrs Twohigg has had to leave her job and return to being her daughter’s carer.
Cassie’s sister Shannon, 14, also cares for her and won this year’s Pride of Bucks Young Carer award.
The Christmas party, which is held at Chalfont St Giles Youth Club, is paid for by the Twohiggs.
Each year the children – and their siblings – receive a special gift. A local DJ also gives time for free and Father Christmas, who hands out the presents, volunteers his time.
Mrs Twohigg said it is not an official charity, but rather a chance for the children to play and have a good time without the worry of being stared at.
She said: “Why do we have it? It’s a chance for families to get together and have a laugh.
“They are safe and nobody is staring at them. Nobody else has to worry.
“We try and get something special for children with Rett syndrome.”
The syndrome is a rare condition that affects brain development and can cause severe physical and mental disability, beginning in early childhood.
The condition mainly affects females, with only 35 boys in the whole of the UK suffering from it, according to Mrs Twohigg.
She added: “We’re quite excited this year. We have one boy coming.”
The Voice of South Bucks Tom Cary has agreed to sing at the party, and there will also be a magician to entertain the families.
Mrs Twohigg said: “It’s not a charity, it’s just something we do. I want it to get bigger, I love it.
“It’s the most exhausting day of my life but it’s the most amazing. We try and get a picture all together to say, ‘we did it, we got 15 girls together in the same room.’”
She said the party is an opportunity for everyone to forget about the outside world and enjoy themselves.
Mrs Twohigg added: “We do whatever we can to just make this life as easy as possible. For just a few hours they relax and enjoy, and remember it’s actually Christmas.
“People say, ‘how do you cope?’, and we say we cope because we have to. At the end of the day they are our children.
“It’s just getting the message out there that these children do exist.”
The Christmas party will be held on Sunday December 6, from 1pm until 4pm, at the club in Narcot Lane.
For more information about the day, visit http:// gofund.me/7y3m89tw.
Mike, Cassie, Shannon and Tracie.