Three-year-old boy diagnosed with rare condition that means he doesn’t feel pain

A mum has opened up about about life with her three-year-old son who has been diagnosed with a rare condition, which means he doesn't feel pain.

Kirsty Bird, 26, from King's Lynn, Norfolk, lives in fear that her son, Ronnie, will snap his neck as he headbutts walls because of a rare condition which means he cannot feel pain.

At the age of one, Ronnie was diagnosed with Smith-Magenis syndrome (SMS), a disorder affecting just one in 25,000 people in the world, which causes mild to moderate learning disabilities, distinctive facial features, sleep disturbances and behavioural problems.

Born two weeks early on June 25, 2019 by C-Section, weighing 9lb 6oz, the mum-of-two was surprised by how big her newborn was, despite Ronnie being before his due date.

Mother’s instinct told her something was wrong and, just six weeks later, he returned to hospital for a four hour, life-saving operation on a strangulated hernia, which threatened to cut off the blood flow to his intestine and, without intervention, could have been fatal.

“That was terrifying and horrible," Bird, who also lives with her partner Daniel Bird, 27, and youngest son, Frankie, one, explains.

"I had to hold him while he was put to sleep and I remember seeing his eyes close and I just hoped he’d be back with me.

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Never crying, barely eating, not crawling and constantly missing development milestones, for the first year of his life, Bird was back and forth to hospital with Ronnie, who is also non-verbal.

Despite his poor appetite, the infant was extraordinarily large and, by the age of one, he weighed 3st (19kg) – the average weight of a three-year-old boy, according to the Royal College of Paediatrics and Child Health.

With doctors growing increasingly concerned by his developmental delays, Ronnie was taken into hospital for blood tests, and three weeks later his parents were told their son had SMS.

The specialist explained that Ronnie could develop issues with his heart and spine and could also be prone to epilepsy – a condition affecting the brain and causing seizures – as well as having developmental delays.

“As a mum, knowing there’s something wrong with your son but there’s nothing you can do about it makes you feel so helpless,” Bird says of the diagnosis.

“I had this baby I had all these dreams for, but suddenly he looked like he was going to have a poorly and troubled life.

“I saw pictures of adults getting more and more deformed as they grew older with SMS. It was so frightening.”

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Following his diagnosis Ronnie’s symptoms escalated alarmingly and saw him bang his head against walls, furniture and even people, in terrifying violent outbursts.

Not feeling pain means Ronnie is not alerted to the danger of his actions, so Bird was forced to try to pad everything she could with pillows and blankets to try and safeguard her son against injury.

“He headbutts walls and doesn’t even flinch," Bird explains. "My hair is just ripped out in chunks because he will start pulling it out.

“He doesn’t feel pain, so he doesn’t associate these things with hurting us.”

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Night time is becoming a particular worry for the family, as Ronnie's agitated outbursts persist when he goes to bed.

The family are hoping to be able to put padding all around the house, but are also looking to raise £7K to pay for a special padded bed to make nights safer for their son.

“At the minute, we don’t have money for proper padding, but wherever Ronnie sits we put cushions and blankets so, hopefully, he’ll hit somewhere soft," Bird explains.

“It would be a dream to pad out the house and make it safe for Ronnie.”

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In the meantime Bird says she lives in fear of her son really hurting himself.

"My stomach drops every time I hear him headbutt a wall," she explains.

“I’m terrified I’m going to go in and see blood everywhere, or that he’ll snap his neck."

Next June, Ronnie is due to start at a special needs school which Bird is delighted about as she says they have a swimming pool and her son loves water.

“The school is something we are really looking forward to," she says. "There’s a swimming pool, and he loves being in water.

“He only ever calms down when he is in water."

The family say Ronnie is also a big fan of the trampoline, which he received as a gift.

“He loves his trampoline," Bird explains. "It was the best gift anyone could have ever bought for him, as he just bounces on his bum and laughs.

“When he laughs and is happy it’s the most beautiful thing.”

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The mum adds: “When he’s okay he’s the most beautiful and cuddliest little boy.

“I just watch him for ages. We don’t get to see moments of joy for him that much, so I really cherish them.

“It makes it so much harder to know there is this sweet boy in there, but it’s like he’s trapped.”

The family have not been told whether Ronnie’s life expectancy will be reduced by his condition, although they live in fear of him endangering his life through his behaviour.

Bird says of her son's future: “It’s always going to be difficult for him, but I will do everything to make sure he has the best life he can possible have.”

To donate to Ronnie’s GoFundMe go to: https://www.gofundme.com/f/please-if-you-can-help-to-keep-our-boy-safe

Additional reporting PA Real Life.