Mum describes agony of not actually knowing what's wrong with her son

The mum of a little boy who is suffering from a mysterious condition so rare it does not have a name has opened up about the agony of not knowing what’s wrong with her son.

Benjamin Davey was born in November 2013 weighing 6Ibs 9oz at the Royal Infirmary of Edinburgh.

The five-year-old is one of just 6,000 children born in the UK every year with a syndrome without a name (SWAN).

When his mum Alex, 40, was 38 weeks pregnant she was told Benjamin’s brain was underdeveloped and he would have a low chance of surviving the birth.

But despite being offered a termination, Alex, from Dunbar, East Lothian, felt she had to give her baby “a chance”.

Now, despite the family not knowing what type of care Benjamin needs due to a lack of diagnosis, he has grown into a “lovely boy” and is bringing the family joy.

Describing her parenting journey Alex says: “My first few scans when I was pregnant were normal. But when [Benjamin] was given an MRI scan while I was pregnant it revealed that his brain wasn’t developed.”

Though doctors offered the couple an abortion, Alex, and her husband, Richard, 38 didn’t feel they could make that decision without actually knowing what was wrong with their baby.

And now that their son is here, they are trying to give him the best life possible.

Benjamin is visually impaired and can’t speak.

For the first 18 months, he was breastfed but due to an epileptic seizure during that time Benjamin has since been tube fed.

The little boy will also use a wheelchair for the rest of his life, but he can sit up for a few seconds on his own.

The five-year-old is also able to use his head to work a switch to operate toys.

“He has epilepsy and something called dystonia which means his muscles spasm,” Alex explains. “He also has something called global developmental delay which means he doesn’t develop like a normal child.”

But there is still no diagnosis for their son’s condition and without that, the family do not know if it will be life-limiting.

“The most difficult thing is the long term planning because we don’t know if his condition will change as he gets older,” Alex explains.

“We don’t know if he will need a carer or anything like that.”

Without knowing how long their son might live, the family are concentrating on making memories for him.

“He’s a lovely boy who is really happy. He doesn’t know any different, so he can only show what he feels through his body language,” the-mum-of-three explains.

“And although he is visually impaired he likes watching lights and shadows.”

SWAN is used to describe a person who is believed to have a genetic condition but the exact cause cannot be found.

It is thought to affect around 6,000 babies a year in the UK, half of which will never receive a diagnosis.

SWAN UK national coordinator, Lauren Roberts, said: “Life for families affected by undiagnosed genetics conditions is tough, living in limbo land with no answers they often feel like they have nowhere to turn.

“Undiagnosed Children’s Day is a chance for them to come together to raise awareness of the issues they face and celebrate all that their children achieve.”

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