The parents of a five-year-old boy with a condition which means he feels no pain and has no concept of danger have told of their struggle to be “the most careful parents in the world.”
A rare condition called Smiths-Magenis Syndrome means that little Jude Grainger’s every move has to be watched by her mother and father.
But for parents Laurie and Dez, their son, who has to sleep in his own padded room, is just a normal child.
Jude was born with the chromosome disorder, causing him to have such a high threshold for pain that he is unaware when his body is being burnt or bruised.
Dad Laurie, 38, and her husband Dez, 48, from Long Eaton, Derbys., now have to take it in turns to watch Jude’s every move.
The syndrome, which affects just one in 25,000 people in Britain, also reverses sleep hormones, so Jude is wide awake during the night, and can violently head-bang if he is frustrated or touched.
To combat this, Jude sleeps in a bed which comes with an extra thick mattress and padded walls to protect him from hurting himself.
Jude, who has six older brothers and sisters, has spent much of his short life being treated at Nottingham’s Queen’s Medical Centre.
Mum Laurie, a care-worker, said: “He can walk, but he can’t stand still, he immediately loses his balance.
“He loves to toddle around and hates being sat still, he has to be strapped down to stay still.
“But if he stands still he falls over.
“If he does fall he can’t tell us about it, and wouldn’t know if he was injured, so we watch him constantly.
“We make sure that he is always safe, thankfully he has never had a major injury, but he always has bumps and bruises as he just doesn’t understand what he has done.
“We even had to get him a new pram, as he just used to bash his head against a bar on the back, he doesn’t know that it will do him harm.
“He can’t communicate with other children either, so he spends a lot of time sat in his own little world.
“But he is still a normal little boy deep down. He loves cars and trains and any vehicle.
“He loves them so much he hates to get out of them or see other people getting out of them, if he’s by a bus stop when people are getting off he is distraught.
“He sleeps in a special bed, it’s padded and two metres square, so that he can walk around and bump into things without being hurt.
“There is a window in the side of that so we can see what he is doing and he can’t fall out.
“His melatonin is different from ours as well, so he doesn’t sleep well at night and then will crash out for at least three hours during the day.”
His parents have been forced to take Jude out of school to prevent him from picking up infections from other children.
Heartbreakingly Jude has no communication and his hearing has been almost destroyed by being unable to tell anyone that he has an earache.
But despite his condition, has older sisters Shaleigh, 17, Caidey, 14, Miah, 12, and eight-year-old Nieve, along with brothers Keaton, 16, and nine-year-old Breeyan, all keep an eye on him.
Jude is now treated in Nottingham and Great Ormond Street and Guys hospitals in London.
His parents are now trying to raise money to buy a specially adapted car which will make it more comfortable for him when he travels to London for treatment.
Speaking about the strain Jude’s condition has had on his family, Dez, who works for Wilkinsons stationary shop, said: “We couldn’t do it without our other children.
“Jude has to sleep in a big padded bed to help him, it is a bed, we just hope no one calls it a cell.
“Our oldest daughter Shaleigh has been amazing, the last time Jude was in hospital she worked an eight hour day, then came to the hospital and ordered us to go home for a rest.
“Then when we were rested she came home so we could go back to the hospital while she was with her brothers and sisters.
“Jude spends loads of time just in his own mind, but if you play JLS or Cheryl Cole his snaps out of it straight away, he loves JLS.”
Hazel Wotherspoon, a trustee at the Smith-Magenis Foundation UK, said: “Jude’s parents are tremendously dedicated.
“This is a syndrome that has a broad spectrum, some children will grow up to be independent, but many will be perpetual toddlers.
“They take constant care, constant looking after. You cannot leave your child alone for any amount of time.
“It is a very long, very tiring, but in the end very rewarding journey, our children are very sweet, very loving and very energetic and worth every minute.”
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