Mother admits she’s sometimes ‘frightened’ of her son, 3, who ‘claws at her face, bites her and headbutts her’ because he suffers from a rare condition that means he can’t feel pain
- Ronnie Bird, age three, from King’s Lynn, Norfolk has Smith-Magenis syndrome
- Unable to feel pain, he headbutts the wall, sofas and people, leaving him bruised
- Mother Kirsty Bird, 26, is trying to raise £7,000 for a padded bed to help him
A mother has revealed her desperation over her three-year-old son who suffers from a rare condition that means he can’t feel pain.
Ronnie Bird, three, was diagnosed with Smith-Magenis syndrome (SMS) aged one.
The extremely rare condition causes behavioural problems and means he doesn’t feel pain, leading to alarming behaviour like headbutting the wall.
Mother Kirsty Bird, 26, admits she fears her son will one day ‘snap his neck’ with the force of impact, and that it has left her sometimes feeling fearful of his strength.
She said: ‘It’s mental torture to see Ronnie every day hurting himself. He’s always so sad.
‘He headbutts walls and doesn’t even flinch. 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.’
Ronnie suffers from angry outbursts. Unable to feel pain, he frequently headbutts the wall or anything he is close to
A beautiful baby: Ronnie as a baby pictured here with his doting mother Kirsty Bird, 26, of King’s Lynn, Norfolk
Ronnie, pictured her with his baby brother Frankie, was diagnosed with the rare condition soon after his first birthday
The concerned mother admits she always feared there was something wrong with her son.
He was 9lb 6oz at birth, despite being born two weeks before his due date, and needed a lifesaving operation at six weeks to tackle a strangulated hernia which threatened to cut off the blood flow to his intestine.
Kirsty said: ‘That was terrifying and horrible. 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.’
Ronnie also behaved quite unusually. He never cried, barely ate – despite his above-average size, didn’t crawl and missed baby milestones.
A rare moment of calm when Ronnie is not suffering from violent outbursts: Mother Kirsty cuddling her sleeping boy
Ronnie, who has Smith-Magenis syndrome (SMS), is the big brother to Frankie, who doesn’t have any difficulties
Aged one, the baby was then diagnosed with Smith-Magenis syndrome (SMS), a rare disorder affecting one in 25,000 people.
What is Smith-Magenis syndrome (SMS)?
Smith-Magenis syndrome is a genetic disability due to a mutation on chromosome 17.
The major features include mild to moderate intellectual disability, delayed speech and language skills, distinctive facial features, sleep disturbances, and behavioural problems.
People with Smith-Magenis Syndrome are characterised by a prominent forehead, broad square face, deep-set eyes, underdeveloped midface, broad nasal bridge and short nose.
Quite often during infancy quite there are feeding problems, weak muscle tone, prolonged napping and lethargy. Later in childhood and adulthood there can be disturbed sleep patterns as well as behavioural problems.
These may include frequent temper tantrums, impulsivity, anxiety, distractibility, aggression and self-injurious behaviours including self-hitting and self-biting.
Source: Smith-Magenis Syndrome Foundation UK
The condition causes mild to moderate learning disabilities, distinctive facial features, sleep disturbances and behavioural problems.
And it also leaves Ronnie with no feeling or awareness of pain and with a risk of developing epilepsy and seizures.
Kirsty said: ‘I felt so worthless, as if I was letting Ronnie down. 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.
‘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.’
Sadly, Ronnie’s symptoms have continued to escalate.
Kirsty’s mother Mary Denisova, 62, a former care home cleaner, looks after her grandson 12 hours a day. Ronnie’s father Daniel, a former insurance worker, also quit his job to care for his son.
The couple rely on carers’ allowance, universal credit and disability living allowance.
Kirsty said: ‘Ronnie’s dad gave up work to stay at home and help us. We’re a proper team. We are constantly skint as we’re trying to make his life happy.
‘But we’re fighting an uphill battle. We’ve bought thousands of toys, lights, blankets and do everything we can.’
Yet even with round-the-clock care, Ronnie is still difficult.
Mainly he is afflicted with terrifying and violent outbursts – and unaware of pain – in rage he will frequently ‘hammer’ his head against walls, furniture and even people.
The outcome of this is while Kirsty loves her ‘beautiful baby boy,’ she admits that his behaviour can frighten her.
She said: ‘My whole heart hurts for him. I am actually frightened of him at times. If he moves abruptly, I flinch because I’m so used to him clawing at my face or headbutting me or biting me.
‘As a mum, you shouldn’t be scared of your child, but he’s so strong.’
Ronnie was born in 2019, and his mother Kirsty immediately realised something was not quite right with him
Ronnie’s condition means he has learning difficulties and is oversized, despite barely eating anything
His strength and violent outbursts also mean Ronnie is in great danger of hurting himself.
Kirsty has padded everything she can with pillows and blankets to try and safeguard Ronnie against injury.
But it is night time that is worst – as this is when his rages come most.
That is why she is raising money to buy him a £7,000 padded bed.
She said: ‘Ronnie headbutts the walls all day, the sofa, everything. We have had to pad out everywhere he sits on and all the furniture wherever he goes. He does it through the night.
The couple have spent thousands on sensory toys for Ronnie to help calm him down when he has his outbursts
Ronnie spends much of his time in hospital with his condition, which is classed as extremely rare
‘This is why we are so desperate for this bed, because he needs to be safe. It would be life changing.’
Eventually, Kirsty hopes to be able to put in place padding around the house, to make it safe for Ronnie – but, for now, she cannot afford to.
She said: ‘At the minute, we don’t have money for proper padding, but wherever he sits we put cushions and blankets so, hopefully, he’ll hit somewhere soft.
‘It would be a dream to pad out the house and make it safe for Ronnie. It’s so soul destroying to know we can’t even do that.
‘We are trying to save his life. My stomach drops every time I hear him headbutt a wall.
‘One day I’m terrified I’m going to go in and see blood everywhere, or that he’ll snap his neck. I live in fear of this every day.’
Ronnie loves water as it is one of the few things that calm him down. His new school has a pool, which mother Kirsty is delighted about
There are some positives in Ronnie’s life however.
Next June, he will start at a special needs school, which Kirsty is delighted about.
She said: ‘The school is something we are really looking forward to. There’s a swimming pool, and he loves being in water.
‘He only ever calms down when he is in water.’
Ronnie also loves watching Paw Patrol and bouncing on a trampoline.
Kirsty said: ‘He loves his trampoline. 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. 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.’
To date, Kirsty and Daniel have not been told Ronnie’s life expectancy will be reduced by his condition – although they live in fear of him endangering his life through his reckless behaviour.
Kirsty said: ‘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 page.
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