2:30pm Wednesday 26th March 2014
FAMILY of Magor identical twins who both suffer from cerebral palsy have set up a fundraising foundation to help them enjoy their lives.
Four-year-olds Olivia and Emily Andrews were diagnosed with cerebral palsy aged two and Emily also has a rare heart problem, Wolff–Parkinson–White syndrome, a congenital condition that makes the heart beat too quickly.
Their cerebral palsy cannot be cured – but their mum Charlotte and uncle Simon, who are also twins, set up the ‘Ups’a’Daisy Foundation and organised a charity ball which will be held at the Celtic Manor in August.
Miss Andrews said: “They’re mobile but it is restrictive and they can’t walk far. They get exhausted and their legs can go into spasm before they get too tired.
“They get fatigued with their day to day lives. It is when they go up and out. You cannot take them shopping. You cannot go out for walks because they just can’t.”
Although their life expectancy is not affected by the disease by the time they are 40, it is likely they will be confined to a wheelchair.
According to the NHS, one in every 400 children in the UK is affected by cerebral palsy, but it is slightly more prevalent among twins.
And as a condition of Emily’s heart condition, she has two electrical pathways in her heart, when people typically have one. It causes her heart to beat too quickly. If her heartbeat fails to decrease for 15 to 20 minutes, she is required to be seen by paramedics. The condition affects between one and three people in every 1,000.
The foundation's funds will be used to buy a connector to join together the twins’ wheelchairs, a new trampoline after the one in their garden was destroyed in the recent winter storms and a mobile heart monitor for Emily so hers can be checked when she is at school.
There is not set total in mind as the foundation will be used to fund things for the girls throughout their lives.
All 240 tickets for the ball have been sold and Miss Andrews has a reserve list of 26 people who want to go but are waiting for tickets to be returned.
She said: “It’s been unbelievable. And we’ve still got people saying: 'I’m coming! I’m coming!'”
Her friend Rebecca Atkinson, also from Magor, has said she will organise a coffee morning at Undy Memorial Hall on May 3 for the foundation.
Simon Andrews, who runs the foundation’s Facebook and Twitter accounts, said: “It’s been absolutely bonkers. I’ve been flabbergasted by the support.”
The twins' stepdad, Phil Adams, is planning to run 13 half-marathons to support the foundation.
So far £605 has been pledged for his effort.
For more information follow the foundation @upsadaisytwins on Twitter or on Facebook on http://on.fb.me/1hf1hJ8.
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