A FAMILY whose son suffers from a one-in-five-million genetic disorder has joined other around the UK in raising awareness through a ‘carpool karaoke’ video.

Following on from the success of a similar Down’s syndrome video earlier his year, Sally Elson and her two-year-old son Cooper appeared on the video alongside fellow sufferers of Cri du chat syndrome.

French for ‘cry of the cat’ due to the cat-like cry of babies affected, the condition is also known as 5p− syndrome due to the disorder meaning children are born without part of ‘chromosome 5’.

It leads to mobility and speech issues and affects around one in 50,000 newborns, but Lostock Gralam boy Cooper’s particular case of 'mosiac' Cri du chat – meaning only around half of his cells are affected – is among the most rare and unfamiliar in the world.

His mum Sally, 34, says she and husband Paul, 35, have struggled to cope with the lack of support and information surrounding Cooper’s ailments now and in the future, since his diagnosis this January.

Now, the family is joining others to raise awareness of the condition in lieu of an organised support system.

Watch the 'carpool karaoke' - article continues below.

Sally said: “We had never heard of it and pretty much everyone I had spoken to is the same. You sort of feel a bit lost and there is no information to receive.

“I remember going home after we were told, feeling a bit clueless about a syndrome we didn’t understand.

“I had to search it and came across a UK charity that fundraises for families and they gave links to this Facebook page – that’s the only real support for families with the syndrome.

“We are just trying to build up a network of support. When people don’t, they shy away from it so we can feel a bit isolated at times.

“Even if it’s just that people start to hear of it and recognise the name, we want to raise awareness.”

The signs were there for ‘happy as Larry’ Cooper at nine or 10 months old, when he was still struggling to sit up and crawl. Sally spent months battling with doctors to get a diagnosis – in her words, she knew ‘something was not right’.

“There is not a great deal of research going on because it’s so rare, and doesn’t affect many people,” Sally explained. Our paediatrician admitted they had no knowledge about it.

“Mobility and speech are often the biggest problems and he will have therapy for that.

“Some kids on the more severe end of the scale can have quite severe learning difficulties. It can be quite serious.

“Luckily for us, I think we are on the milder end of that scale, judging from how he is now. He is developing, although he is behind, and with it being a rare condition it’s impossible to get an idea of how he might be affected in the future.

“That’s something we are finding difficult as his mum and dad to accept – we are looking for answers that don’ exist. We just have to cross these bridges when we come to them.

“For example, he may need to go to special school, but it depends on how he is doing at the time and we can’t make that decision until the last minute.

“It’s difficult for us as parents to accept it. We feel like we are grieving, but he is here with us. From these support groups, it seems a lot of people feel the same. It’s difficult.”

For Sally and Paul, a growing social network of parents in similar positions is the only source for advice and support, and videos like carpool karaoke offers a valuable chance to reach out to others and give that network a boost.