The parents of a three-year-old Reigate boy with an extremely rare genetic brain disorder have been told to prepare a plan for their young son's possible death.

Reuben Condie, three, was diagnosed with Joubert Syndrome a few weeks after he was born.

The NHS has no official data on how many people are affected by it but, according to his mother, Sophie Condie, 32, and father, Mike Condie, 28, it affects only around 1,500 people worldwide.

The condition can affect someone's mobility, breathing and muscle tone and one of the most troubling aspects for Reuben is that it causes him to stop breathing for relatively long periods.

Reuben Condie will turn four at the end of the month
Reuben Condie will turn four at the end of the month

And because those periods of time appear to be increasing, Mr and Mrs Condie, who live in Lonesome Lane, Reigate, have been told to prepare for the worst.

Mrs Condie said: "He's stopped breathing from a young age, but the times that he's done it he's probably only been blue, and sort of out, for a minute or two. I know it doesn't sound a long time, but it's a really long time when it happens.

"It's terrifying because you're wondering if he's going to come back, but the last couple of times he's stopped breathing he's been out for a bit longer, between six and nine minutes each time now.

"The paramedics have asked what his plan is, and suggested it might be worth thinking of having a plan [for if he dies]."

She said the suggestion has "taken the air from our lungs" because it made her realise "there is every chance that we won't be able to save him next time".

Mrs Condie added: "You never want to think about it, ever. I've never really thought about actually losing him and that's the thing I can't get my head around at the moment."

Though the family have found this tough to deal with, Mrs Condie said they are getting support from a hospice in Guildford and are beginning to make steps to have a plan, should they need one.

Joubert Syndrome affects each person in different ways and in differing levels of severity.

Mrs Condie explained: "[Reuben is] probably more on the severe [end of the] spectrum.

"One of the most common features is a visual impairment. From when Reuben was born, his eyes were twitchy and his eyelids wouldn't open because another symptom is low muscle tone.

"It can affect Reuben quite severely. Balance and coordination is probably one of the biggest things that will show up for a child, so walking and sitting up and holding themselves is quite tough.

"The other thing they can present with is panting, so they have a very erratic breathing pattern."

Reuben is the oldest of their two children – their daughter Willow is now eight months old – and Mrs Condie said the first few months of Reuben's life were very challenging as they weren't sure what was wrong.

Reuben and his Dad, Mike Condie
Reuben and his Dad, Mike Condie

The mother-of-two said: "Because he was our first child you don't really think about it. Then when we came home, he just deteriorated really.

"He would sleep for long periods of time, like five to six hours, wake up screaming, we'd feed him but he had no coordination with his mouth, so he would spill most of his food, and not swallow it.

"And then he got very bad reflux, so he would vomit and cry and cry. He would be in agony until he went to sleep again and this routine went on for a few weeks."

When Reuben was finally diagnosed with Joubert Syndrome, Mrs Condie began to learn more about the complex syndrome.

She said: "I just don't think it really ever sinks in. I think I've always been a little bit naïve about disabilities and special needs, I don't think I've ever really been exposed. I've never really known what the disabled world looks like or how challenging it can be, or where you can get support from.

"I remember both Mike and I feeling really stunned. You Google it and you do all the things they tell you not to do and you just find out more.

"You see some scary stuff because you see children learning to walk and you think 'will my son struggle with all of this?' You feel a bit 'why us?' and all those feelings, but then you realise you have to learn and push forward."

Another thing the family are working towards is making their home more disability-friendly so they can create a safe, comfortable space for their two children.

The family have done various fundraising activities so far, including a comedy night which featured Britain's Got Talent star Jonny Awsum at Banstead Cricket Club, where Mr Condie works as a groundsman.

There is a goal of raising £85,000 so that their home can be fitted with ramps and other features to make it more liveable for Reuben.

Mrs Condie said: "It would just be so good. Going away with Reuben is pretty much impossible at the moment, so things like holidays aren't really going to be feasible.

"So for us, having our house perfect is everything because it is like our sanctuary. We all love this home and we really want to make it perfect for all of us. You just want Reuben to have as normal a life as possible."

Reuben with dad Mike
Reuben with dad Mike

The family's next fundraising venture will be held on August 27 at Banstead Cricket Club, where there will be live music, cocktails and food.

Tickets cost £5 and can be bought from the cricket club in advance or on the door on the night.

To donate to the family's Justgiving page, visit http://www.justgiving.com/crowdfunding/superboy .

Mrs Condie said: "If anyone is able to donate and share our story, and share awareness, we'd be hugely grateful and it would be a massive thank you from all of us."