A woman has described her concern for her three-year-old son, who has a unique disease that prevents him from feeling pain.
Ronnie Bird, three, was diagnosed with Smith-Magenis syndrome (SMS) when he was one year old. The exceedingly rare illness creates behavioral issues and implies he doesn’t feel pain, resulting in unusual behavior such as headbutting the wall.
Kirsty Bird, 26, reveals she worries her kid would one day ‘snap his neck’ from the intensity of collision, and that it has made her question his toughness.
It’s mental torment to witness Ronnie harming himself every day, she added. He’s constantly depressed.
He headbutts walls without even flinching. My hair is being taken out in clumps as he intends to pull it out. Because he doesn’t experience pain, he doesn’t correlate these things with causing them suffering.
The worried mother reveals she has always suspected something was amiss with her son.
Despite being born two weeks early, he weighed 9lb 6oz at birth and had a lifesaving operation at six weeks to repair a strangulated hernia that threatened to cut off blood supply to his intestine.
That was terrible and dreadful, Kirsty remarked. She had to hold him when he was put to sleep, and recall watching his eyes close and hoping he’d return to her.
Ronnie’s behavior was likewise odd. He never screamed, rarely ate despite his larger-than-average size, didn’t crawl, and missed all of the newborn milestones.
When the infant was one, he was diagnosed with Smith-Magenis syndrome (SMS), a rare condition that affects one in every 25,000 individuals.
Mild to moderate academic impairments, distinguishing facial traits, sleep abnormalities, and behavioral issues are all symptoms of the illness.
It also leaves Ronnie with no sense of pain and puts him at danger of getting epilepsy and convulsions.
She felt so useless, like if she was letting Ronnie down, Kirsty said. Realizing there’s something wrong with one’s son but realizing there’s nothing one can do about it makes one feel hopeless as a mother.
She had this baby for whom she had all these hopes, but he appeared to have a bleak and uncertain future. With SMS, she saw photographs of adults becoming increasingly disfigured as they grew older. It was terrifying.
Unfortunately, Ronnie’s problems have worsened.
Kirsty’s mother, Mary Denisova, 62, a former care home cleaner, is responsible for her grandson 12 hours a day. Daniel, Ronnie’s father and a former insurance employee, likewise stopped his career to look for his son.
Carers’ allowance, universal credit, and disability living allowance are all used by the pair.
Ronnie’s dad gave up job to remain at home and support them, Kirsty explained. They work well together. They ‘re always broke because they’re trying to make his life better.
However, they are facing an uphill struggle. They’ve purchased hundreds of toys, lights, and blankets and are doing everything they can.
Despite round-the-clock care, Ronnie remains challenging.
He mostly suffers from scary and violent outbursts, and because he is oblivious to pain, he will regularly ‘hammer’ his head against walls, furniture, and even others in wrath.
As a result, while Kirsty adores her precious baby son, she confesses that his behavior might worry her.
Her whole heart breaks for him, she added. She is truly afraid of him at times and shudders when he moves suddenly since he is used to him clawing at her face, headbutting her, or biting her.
One shouldn’t be afraid of one’s child as a mother, but he’s so powerful.
Ronnie is in grave danger of injuring himself due to his strength and aggressive outbursts.
Kirsty has cushioned all she can with cushions and blankets to protect Ronnie from damage.
But it’s at night that things get the worse, since that’s when his rages are the most intense.
That is why she is gathering funds to purchase a £7,000 cushioned bed for him.
All day, Ronnie headbutts the walls, the sofa, everything, she claimed. They’ve had to pad out every seat he sits on and every piece of furniture he moves. He does it all night long.
This is why they need this bed so badly; he needs to be protected. It would change her life.
Kirsty wants to be able to install padding around the home at some point to make it safe for Ronnie, but she cannot finance it just now.
At the moment, they don’t have the money for appropriate cushioning, but everywhere he sits, they lay cushions and blankets so, ideally, he’ll strike somewhere soft, she explained.
It would be a dream come true to pad out the house and secure it for Ronnie. It breaks her heart to know they can’t even do that.
They’re attempting to preserve his life. Every time she hears him headbutt a wall, her heart breaks.
She is frightened that one day she’ll go in and see blood everywhere, or that he’ll snap his neck. Every day, she live in terror of this.
Nonetheless, there are some bright spots in Ronnie’s life.
Kirsty is overjoyed that he will begin attending a special needs school in June.
The school is something they are definitely looking forward to, she added. There’s a pool nearby, and he enjoys swimming.
He only relaxes when he’s in water.
Ronnie also enjoys Paw Patrol and jumping on a trampoline.
He loves his trampoline, added Kirsty. It was the nicest gift anyone could have given him, as he just laughed and bounced on his bum. It’s the most beautiful thing when he laughs and is pleased. When he’s fine, he’s the cutest and cuddliest little guy.
She simply stare at him for a long time. They don’t get to see many happy moments for him, so she treasure them.
It makes it so much more difficult to know there’s this wonderful baby in there, but he’s stuck.
Kirsty and Daniel have yet to be informed that Ronnie’s life expectancy would be decreased as a result of his disease, despite the fact that they live in terror of him jeopardizing his life via his irresponsible behavior.
It’s always going to be challenging for him, but she’ll do all she can to make sure he has the greatest life possible, Kirsty added.
