Thuds punctuate family life for mum who fears her 3 year old son will snap his neck headbutting walls as he cannot feel pain

Thuds like a heaving bass punctuate family life for a devoted mum who is terrified her three-year-old son will snap his neck at any second as he headbutts walls because of a rare condition which means he cannot feel pain.

Now Kirsty Bird, 26, is desperate to raise £7K for a padded bed to make night-time safer for her son, Ronnie, who was diagnosed with Smith-Magenis syndrome (SMS) when he turned one – a disorder affecting one in 25,000 people in the world, which causes mild to moderate learning disabilities, distinctive facial features, sleep disturbances and behavioural problems.

Five weeks pregnant with her youngest son Frankie, one, when Ronnie was diagnosed, Kirsty, who lives in King’s Lynn, Norfolk, with her partner Daniel Bird, 27, a former insurance worker, and their two boys, said: “This padded bed could save his life.”

She added: “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.”

Born two weeks early on June 25, 2019, by C-section due to a failed induction, at Queen Elizabeth Hospital in King’s Lynn, Kirsty was surprised by how big Ronnie was, as he weighed 9lb 6oz despite 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 lifesaving operation on a strangulated hernia, which threatened to cut off the blood flow to his intestine and, without intervention, could have been fatal.

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.”

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

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

Taken into hospital for blood tests, as doctors grew concerned by his developmental delays, three weeks later Kirsty and Daniel were told that Ronnie had SMS.

It was a devastating moment for the devoted parents, who were told by their specialist that he could develop issues with his heart and spine and could be prone to epilepsy – a condition affecting the brain and causing seizures – as well as having developmental delays.

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.”

She added: “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.”

And Ronnie’s symptoms escalated alarmingly, seeing him “hammer” his head against walls, furniture and even people, in terrifying violent outbursts.

By mid 2021 Kirsty, who was pregnant with Frankie, says Ronnie began to headbutt “anything and everything” in their home – including her.

Padding everything she could with pillows and blankets, to try and safeguard him against injury, because not feeling pain means he is not alerted to the danger of his actions, all she can do is try and soften his blows.

Also tearing out chunks of his mother’s hair by the end of 2021, she said: “His behaviour got really bad when he turned two.”

Realising drastic action was needed, Kirsty was already a full-time mum, but her mother, Mary Denisova, 62, a former care home cleaner, started devoting 12 hours a day to looking after him and Daniel quit his job to muck in.

The family now rely on their carers’ allowance, universal credit and disability living allowance, yet barely scrape by, as the cost of the “thousands” of sensory toys needed to help calm him down alone is astronomical.

Kirsty said: “Ronnie’s dad gave up work to stay at home and help us. We’re a proper team.”

She added: “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.”

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

Kirsty, who says Frankie is, thankfully, perfectly healthy, added: “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.”

She added: “This is why we are so desperate for this bed, because he needs to be safe. It would be life changing.”

Plagued by guilt for bringing Ronnie into the world and not being able to protect him, Kirsty had no warning that anything was wrong with him and she says his condition is not genetic and remains unexplained.

One of the hardest aspects of his condition for Kirsty is that, while she 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.”

Eventually, she 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.”

She added: “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.”

Due to start at a special needs school next June, Kirsty is delighted for Ronnie, as they have a swimming pool and he loves water.

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.”

Other glints of hope for the family come when Ronnie watches Paw Patrol, which he loves and makes him giggle and when he is let loose 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.”

She added: “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 go to: https://www.gofundme.com/f/please-if-you-can-help-to-keep-our-boy-safe