A COUPLE have been left heartbroken after their one-year-old daughter’s ‘sweet quirk’ turned out to be a deadly genetic disease.
Little Evelyn Ohlsson gained the nickname “happy feet” as her parents Laura and Craig noticed they were the only thing their tot seemed to wiggle.
Brave Evelyn Ohlsson, 1, only wiggled her feet – leading her parents to realise their baby was unwell[/caption]
The tot was diagnosed with the genetic disorder spinal muscular atrophy (SMA)[/caption]
But the young family, from Royston, Hertfordshire, are now praying for a miracle after discovering the sinister secret behind their daughter’s movements.
Evelyn was devastatingly diagnosed with spinal muscular atrophy (SMA), a genetic disorder that causes paralysis, muscle weakness and progressive loss of movement.
The little girl suffers from the most severe form of the disease which is typically detected in babies before they reach six months.
Laura told Herts Live: “We always used to say that she had happy feet. You know, it just seemed like her little thing.”
But in a cruel twist of fate, Evelyn’s cute habit turned out to be a symptom of SMA – as it restricts a child’s movements due to decreased muscle tone.
Healthy babies usually kick from the knee, but as the one-year-old was only moving her feet, Laura soon realised her baby was struggling with hypotonia.
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She began researching the condition and the mum then sadly started matching up several other symptoms of SMA with Evelyn’s behaviour.
She explained: “I’d seen a video whilst I’d been doing too much digging and I immediately thought to myself: ‘Oh my god, Evelyn does that. That’s what she does.’
“I had absolutely no idea what SMA was. I’d never heard of it.”
Another telling sign of the genetic disease is when the top of the chest narrows due to muscle weakness in the rib cage, known as a bell-shaped chest.
Laura said it wasn’t noticeable in her child at first – and began to think she was imagining it when she spotted it.
Evelyn also had a slight tremor in her tongue, but the mum again tried to convince herself everything was okay.
Laura’s world soon came crashing down when she held a family friend’s baby who was born three months after Evelyn – and instantly felt the strength in the infant’s muscles.
She took her daughter to A&E to get her checked over and medics kept them in overnight to monitor the tot, who delivered the shattering news.
The doctor started examining Evelyn and tragically began picking up on key markers suggesting she had the symptoms of SMA.
There’s one phrase that always sticks with me when we first found out. We’re grieving the life that we thought we were going to have.
Laura said: “That was really difficult. I knew what it meant.
“I knew what the prognosis was, whereas with Craig, I hadn’t wanted to worry him. It was really difficult because they then had to explain it to Craig.
“It was overwhelming. I just remember them saying it’s very serious.”
Doctors told her the “very weak” Evelyn was dealing with a progressive condition that was only going to get worse.
Craig said: “That day, I just remember getting a text to say the doctors wanted to talk to us.
“I remember walking in, my legs shaking, because I knew it wasn’t normal. They told us and I just remember Laura crying, and holding her.
“There’s one phrase that always sticks with me when we first found out. We’re grieving the life that we thought we were going to have.”
The life expectancy for a baby in Evelyn’s condition is just two years, but research into treatments is constantly evolving.
Evelyn underwent gene therapy in June this year to prevent her muscles from wasting and is steadily showing signs of improvement.
“SHE’S A SUPERHERO”
Now Laura and Craig are on a mission to raise awareness of SMA in a bid to inform parents of the subtle symptoms.
“We owe it to Evelyn and we owe it to other babies to make sure that people know what this is,” Laura said.
“We just want everyone to know how amazing she really is. She’s so brave.
“She has so many needles and tests and things done to her, but she’s always got a smile on her face. She really is just the happiest baby, despite everything.”
Craig poignantly told how their family call her their little “pink power ranger”, saying: “She’s a superhero for what she’s gone through.”
Laura said the brave tot manages to keep their family smiling, despite the adversity.
“It’s looking forward and just having that belief, and honestly we have no option but to believe in her,” she said.
“She’s so strong. She’s so brave. Sometimes we’ve had a particularly rough week or she’s really dipped, and it’s been a couple of days after that and she’s moved her arm in a new way for the first time.
“It’s like she can sense it in us and she can tell we need something to give us that bit of positivity again – to give us that lifeline.
“It just amazes me. It’s almost like she knows. She’s incredible.”
We previously told how a mum was left heartbroken when her toddler’s eye colour change turned out to be cancer.
And one gym-loving teenager who was told he had pulled a muscle by doctors, lost the ability to walk overnight – but tragically found out he had cancer.
Laura and Craig are now on a mission to raise awareness of SMA[/caption]
The young family heartwarmingly refer to Evelyn as their little ‘pink power ranger’[/caption]