Rachel and Nick Davies of Malvern decided to do some fund raising for CdLS with an event at their local cricket club and with a friend who would run a marathon.

They contacted their local media to publicise their fundraising efforts and were delighted when one of the regional papers took a great interest in what they were doing.

What happened next horrified Nick and Rachel as the story published in the Sunday Mercury had a number of major inaccuracies and misquotations – within 24 hours it became national news.

The Sun newspaper featured a picture of Edward Davies with the headline ‘Lad who must live without giggling’.

The story said that “Tragic” baby Edward Davies must never laugh or cry because it could “kill” him.

The story was followed up in other papers around the country and overseas.

“It was unbelievable nonsense,” said Rachel.

“But all the other papers believed it.

We had the press outside our house, people pushing offers to sell our story through the letterbox.

We had TV companies wanting to make documentaries.”

Rachel spoke at the Telford family conference and showed the press cuttings and detailed the intrusion on the whole family.

The family’s local paper contacted them and wanted to do a story to “put the record straight”.

Rachel agreed but subject to being able to see the story.

A copy was also sent to the Foundation office to check for factual accuracy.

Alan Peaford said The Sun had talked about life expectancy being limited to childhood.

“It was lazy journalism. If the journalist – Andrew Parker – had bothered to check the website he would have got accurate although less sensationalist information. The local Solihull paper did it properly and checked their facts.”

But the TV and newspaper coverage did have an advantage. “Our fundraising efforts did get noticed and people we had lost touch with made contact and made donations.”

By the time of the Telford meeting Rachel and Nick had raised more than £6,000 and the donations continue to come in.

“It was a horrible period of time, very upsetting and quite scary,” Rachel told families.

“When the first journalist came to our house, they all seemed very nice but I will now always push to check the facts first.

We wanted the story to be about fund raising they wanted it to be about Edward’s condition.”

During the period of frenzied coverage the Foundation office was answering press calls and correcting misinformation.

“We kept saying CdLS children can smile and giggle as much as any other child and explained about reflux and the problems of pneumonia.

There were also some calls from people with a CdLS child who hadn’t previously been on our database.

I like to think that the families that were in touch with us would have known the story in The Sun was nonsense, but it does add worries.”