• Publish Your article
  • Editorial Policy
  • About Us
  • Contact
  • Advertise
Thursday, October 5, 2023
  • Login
No Result
View All Result
Birmingham Times
  • Home
  • UK News
  • Politics
  • Business
  • Entertainment
    • All
    • Sports
    Which teams have been eliminated from the Rugby World Cup 2023?

    Which teams have been eliminated from the Rugby World Cup 2023?

    Beloved car shop finds new life after store closes down with budget supermarket set to move in

    Beloved car shop finds new life after store closes down with budget supermarket set to move in

    South Africa 8-13 Ireland LIVE RESULT – Rugby World Cup 2023: Irish pick up stunning win and make statement

    South Africa 8-13 Ireland LIVE RESULT – Rugby World Cup 2023: Irish pick up stunning win and make statement

    My new Amazon mirror is a 10/10 – it has a hidden compartment that fits my makeup and jewelry, that’s not the best part

    My new Amazon mirror is a 10/10 – it has a hidden compartment that fits my makeup and jewelry, that’s not the best part

    Rugby World Cup match halted as Namibia star suffers HORROR injury vs New Zealand with ankle left facing wrong way

    Rugby World Cup match halted as Namibia star suffers HORROR injury vs New Zealand with ankle left facing wrong way

    Is Man Utd vs Brighton on TV? Channel, stream, kick-off time and team news for Premier League clash

    Is Man Utd vs Brighton on TV? Channel, stream, kick-off time and team news for Premier League clash

    Wales 0 South Korea 0: Son Heung-min off target while new Spurs team-mate Brennan Johnson looks rusty in bore draw

    Wales 0 South Korea 0: Son Heung-min off target while new Spurs team-mate Brennan Johnson looks rusty in bore draw

    I stayed with my husband despite his secret family and now I regret it

    I stayed with my husband despite his secret family and now I regret it

    Moment Russian ‘electrics factory’ erupts in bright blue fireball after Ukraine launches another late-night drone strike

    Moment Russian ‘electrics factory’ erupts in bright blue fireball after Ukraine launches another late-night drone strike

  • Lifestyle
    • All
    • Fashion
    • food
    • Health
    • Travel
    I went through the world’s most painful op to get a bit taller… it cost £35k-an-inch & was agony but it was worth it

    I went through the world’s most painful op to get a bit taller… it cost £35k-an-inch & was agony but it was worth it

    Mum sparks fierce debate with her jacket potato ‘birthday cake’, but insists the food mountain was completely devoured

    Mum sparks fierce debate with her jacket potato ‘birthday cake’, but insists the food mountain was completely devoured

    UK landmark crowned the most beautiful UNESCO World Heritage Site in the world

    UK landmark crowned the most beautiful UNESCO World Heritage Site in the world

    Our adorable hairy baby has a legion of fans – they say he can grow a beard better than most men

    Our adorable hairy baby has a legion of fans – they say he can grow a beard better than most men

    Brits’ perfect three-course meal revealed – so do your choices make the menu?

    Brits’ perfect three-course meal revealed – so do your choices make the menu?

    Shrek fans can stay in this iconic swamp for free on Airbnb (and for once, there really is no catch)

    Shrek fans can stay in this iconic swamp for free on Airbnb (and for once, there really is no catch)

    How much have I cost the NHS? How to find out

    How much have I cost the NHS? How to find out

    I’m a mum & have the best tricks to make autumn treats without baking anything – they’re perfect for kids and so easy

    I’m a mum & have the best tricks to make autumn treats without baking anything – they’re perfect for kids and so easy

    This is the UK city with more pubs than any other – and it’s not London

    This is the UK city with more pubs than any other – and it’s not London

    I’m a doctor and these are fountain of youth secrets you actually need to know… & it all starts with gardening

    I’m a doctor and these are fountain of youth secrets you actually need to know… & it all starts with gardening

    Trending Tags

    • Golden Globes
    • Mr. Robot
    • MotoGP 2017
    • Climate Change
    • Flat Earth
  • Health
  • Opinion
  • Tech
  • Science
  • Travel
  • Real Estate
  • Sports
  • More
    • Crypto
    • Press Release
Birmingham Times
No Result
View All Result
Home Lifestyle Health

Our one-year-old daughter’s ‘sweet quirk’ turned out to be a deadly genetic disease and now we’re praying for a miracle

by Chandler
December 28, 2022
Reading Time: 10min read
0
SHARES
Share on FacebookShare on TwitterShare on Reddit


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.

Our one-year-old daughter’s ‘sweet quirk’ turned out to be a deadly genetic disease and now we’re praying for a miracle
Family Handout

Brave Evelyn Ohlsson, 1, only wiggled her feet – leading her parents to realise their baby was unwell[/caption]

Our one-year-old daughter’s ‘sweet quirk’ turned out to be a deadly genetic disease and now we’re praying for a miracle
Family Handout

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.

Most read in The Sun

GANG FEUD


Elle Edwards was gunned down after 'gangster was tipped off about rival at pub'


BOXING DAY HORROR


Brit mum knifed to death in 'senseless' burglary killing as teens charged

NUMBERS GAME


Peter Andre sparks baby rumours with wife Emily after fans spot Christmas clue

LAUR class


ITV's Laura Woods knocks back Love Island star with classy reply to date request

ABOUT TIME


People are only just discovering what AM and PM means – it’s not what you think

NOT SO MERRY


Sam Faiers devastated as she reveals Christmas was ruined by nasty illness


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.


Craig OhlssonEvelyn's father

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.

Our one-year-old daughter’s ‘sweet quirk’ turned out to be a deadly genetic disease and now we’re praying for a miracle
Family Handout

Laura and Craig are now on a mission to raise awareness of SMA[/caption]

Our one-year-old daughter’s ‘sweet quirk’ turned out to be a deadly genetic disease and now we’re praying for a miracle
Family Handout

The young family heartwarmingly refer to Evelyn as their little ‘pink power ranger’[/caption]



Source link

Related Posts

I went through the world’s most painful op to get a bit taller… it cost £35k-an-inch & was agony but it was worth it

I went through the world’s most painful op to get a bit taller… it cost £35k-an-inch & was agony but it was worth it

by Chandler
October 1, 2023
0

AN INKED-UP influencer underwent an “excruciating” and expensive limb-lengthening operation to become just two inches bigger. Yeferson Cossio wanted to become the epitome of tall, dark and handsome after finding out...

Our adorable hairy baby has a legion of fans – they say he can grow a beard better than most men

Our adorable hairy baby has a legion of fans – they say he can grow a beard better than most men

by Chandler
September 27, 2023
0

AN ADULT-LOOKING baby with a “beard better than most men” has gone viral on social media. Youngster Joao Miguel has taken the internet by storm after videos posted onto TikTok by...

How much have I cost the NHS? How to find out

How much have I cost the NHS? How to find out

by Chandler
September 23, 2023
0

HAVE you ever wondered how much you’ve cost the NHS? From fractured bones to missed GP appointments, and medicines to 999 calls, you may not realise how much it adds up. EPAThe...

I’m a dog whizz – what you need to do if your furry friend eats chocolate & the only time you can skip the vet

I’m a dog whizz – what you need to do if your furry friend eats chocolate & the only time you can skip the vet

by Chandler
September 15, 2023
0

A DOG guru has revealed the exact steps you need to take in the event that your dog eats chocolate by accident.  The expert took to her social media account to...

Major change to GP appointments will finally end the ‘8am scramble’ & dreaded engaged tone – here’s when it’s happening

Major change to GP appointments will finally end the ‘8am scramble’ & dreaded engaged tone – here’s when it’s happening

by Chandler
August 22, 2023
0

BRITS will finally be able to escape the dreaded “8am scramble” to bag a doctor’s appointment as major changes are rolled out. Every GP surgery in England is set to switch...

I was left with ‘painful’ blisters despite wearing gloves after brushing against bush – people don’t know it’s dangerous

I was left with ‘painful’ blisters despite wearing gloves after brushing against bush – people don’t know it’s dangerous

by Chandler
August 18, 2023
0

A GARDENER was left with “painful” blisters despite wearing gloves after brushing against dangerous bush. Robin Hankins was working in a garden in Dorset when she touched the invasive plant. The...

Next Post
Meet England rugby coach Kevin Sinfield – a marathon-running machine who has raised £7m for pal Rob Burrow

Meet England rugby coach Kevin Sinfield – a marathon-running machine who has raised £7m for pal Rob Burrow

Popular News

Jeremy Kyle says ‘world has moved on’ since ITV scandal as he joins Nicola Thorp on TalkTV breakfast

Jeremy Kyle says ‘world has moved on’ since ITV scandal as he joins Nicola Thorp on TalkTV breakfast

3 days ago
Britain braced for invasion of creepy cannibal praying mantis

Britain braced for invasion of creepy cannibal praying mantis

3 days ago
Which teams have been eliminated from the Rugby World Cup 2023?

Which teams have been eliminated from the Rugby World Cup 2023?

3 days ago
I went through the world’s most painful op to get a bit taller… it cost £35k-an-inch & was agony but it was worth it

I went through the world’s most painful op to get a bit taller… it cost £35k-an-inch & was agony but it was worth it

3 days ago
Sycamore Gap: Lumberjack returns to farmhouse after being quizzed by police – as cops find giant chainsaw in barn

Sycamore Gap: Lumberjack returns to farmhouse after being quizzed by police – as cops find giant chainsaw in barn

3 days ago
Mum sparks fierce debate with her jacket potato ‘birthday cake’, but insists the food mountain was completely devoured

Mum sparks fierce debate with her jacket potato ‘birthday cake’, but insists the food mountain was completely devoured

3 days ago
Rishi Sunak should be bold on vote-winner policies to show he’s prepared to overturn orthodoxy and truly lead

Rishi Sunak should be bold on vote-winner policies to show he’s prepared to overturn orthodoxy and truly lead

3 days ago
Grant Shapps branded a ‘newly-minted cretin’ by Russia and accused of trying to start World War III

Grant Shapps branded a ‘newly-minted cretin’ by Russia and accused of trying to start World War III

3 days ago
Birmingham Times

All Rights Reserved © Birmingham Times - The Voice of UK

Important Links

  • Publish Your article
  • Editorial Policy
  • About Us
  • Contact
  • Advertise

Follow Us

No Result
View All Result
  • Home
  • Politics
  • UK News
  • Business
  • Science
  • National
  • Entertainment
  • Gaming
  • Sports
  • Fashion
  • Lifestyle
  • Travel
  • Health
  • Food

All Rights Reserved © Birmingham Times - The Voice of UK

Welcome Back!

Login to your account below

Forgotten Password?

Create New Account!

Fill the forms below to register

All fields are required. Log In

Retrieve your password

Please enter your username or email address to reset your password.

Log In