Mum wants funding to help twins

Karen Preece with twins Sienna and Darcy, two

Karen Preece with twins Sienna and Darcy, two

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A mother whose twins suffer from a rare congenital disorder has launched a campaign to persuade the Government to fund a treatment for the condition.

Sienna and Darcy Preece, who are nearly two, have phenylketonuria (PKU). It means their bodies are unable to break down a substance which can build up and cause brain damage.

PKU is such a rare disorder only an estimated 60,000 people worldwide suffer from it, and Darcy and Sienna are believed to be the only twins in Britain to have the condition.

Their mother, Karen, has appealed for people to sign an online petition which she hopes will convince the Government to fund a treatment for the condition.

She said: “All their food has to be weighed and measured and they have to have blood tests once a week.”

She also said she is dreading the twins finding out something is wrong with them once they started mixing with other youngsters.

She said: “I am dreading when they go to nursery and school. They are not aware of any difference but they soon will be. Then it’s about them accepting that.”

And she said there was a lot she and her husband, the twins’ father Paul, have to be aware of when looking after the toddlers.

She said: “Darcy and Sienna also have several food intolerances, which makes it a double whammy.

“We have got to plan all their food. Every week we take a blood sample and send it to Great Ormond Street Hospital. A dietician tells us how much protein they should eat that week. If they don’t want to eat it really is a challenge.

“When they become poorly they can become angry and unable to concentrate. There are lots of ramifications.”

Some other European countries and the United States already funds treatment for the condition, but the UK Government says the high cost of doing so means it is unable to follow suit.

Karen said: “There’s a treatment out there and it is funded in some parts of Europe.”

At the time of going to press, the petition had more than 2,500 signatures – but it is a long way short of its target of 100,000, which would see the matter debated in Parliament.

She said: “It’s such a rare condition. I have never met anyone who has heard of it so that’s going to be a big stumbling block.”

Karen’s campaign has received the backing of Kettering MP Philip Hollobone, who has promised to send a letter on the matter to the health minister with a copy of the petition attached.

To sign the petition, visit www.change.org/en-GB/petitions and search for PKU UK Government.