A mother has opened up about her agony as she revealed her son hurts himself and the people around him because of his disorder.
26-year-old Kirsty Bird bravely spoke out to share awareness about Smith-Magenis syndrome after her 3-year-old son, Ronnie, was diagnosed with the developmental disorder when he was just one year old.
Smith-Magenis syndrome is a rare developmental disorder that is associated with intellectual disability, delayed cognitive skills, and behavioral problems such as outbursts of violence and anger.
As Kirsty revealed, her son can’t feel pain and has been hurting himself and the people around him for years.
Though the young mom insisted a parent should never be afraid of their child, she said she had no choice but to get used to her son headbutting and biting her and pulling out her hair.
“It’s mental torture to see Ronnie every day hurting himself. He’s always so sad,” Kirsty says.
“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.”
The mom also recalled getting concerned about her baby when he was just an infant because he rarely ate and never cried. The child also missed countless milestones such as crawling.
Eventually, at the age of 1, Ronnie was diagnosed with Smith-Magenis syndrome, a condition that progresses with age and greatly affects the victim’s behavior and mental capabilities.
“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,” Kirsty 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.”
As Ronnie’s symptoms continued to worsen, Kirsty’s mom, Mary Denisova, and Ronnie’s dad, Daniel, quit their jobs to look after the toddler.
While the mother insisted the family is “a proper team” who is trying to make Ronnie’s life happy, she admitted they are “fighting an uphill battle.”
“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,” Kirsty expressed.
“As a mum, you shouldn’t be scared of your child, but he’s so strong.”
She continued: “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.”
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