A couple from Reigate has spoken about ‘having the air taken from their lungs’ when told to prepare for their son’s possible death by doctors.
Sophie and Mike Condie were speaking to the Surrey Mirror about their 3-year-old son, Reuben, who has Joubert Syndrome, a disability which affects mobility and muscles and can cause him to stop breathing. About 1,500 people are diagnosed with it worldwide.
Concern is now growing as Reuben has stopped breathing for longer recently – it can now be between 6 and 9 minutes.
His parents are currently fundraising to reach £85,000, so their home can be fitted with the necessary equipment to create a comfortable space for their son.
Information on how to donate or get involved can be found here: http://www.justgiving.com/crowdfunding/superboy
The full article can be read on the Surrey Mirror’s website: http://www.surreymirror.co.uk/s/story-30474297-detail/story.html