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Little girl who loves Frozen will never be able to smile due to rare neurological condition

Mirror Online 2024/4/27

Four-year-old Eva Hadley has been diagnosed with Moebius syndrome - a condition which only affects 200 people in the UK - and means she may never be able to smile

Eva Hadley can't smile
Eva Hadley can't smile

A little girl will never smile after being born with a rare neurological condition, which affects only around 200 people across the entire country.

Eva Hadley, 4, has Moebius syndrome which affects the muscles in the face that control facial expressions and eye movement. It means princess-loving Eva will never be able to smile, frown, raise her eyebrows or even blink.

There is no cure or treatment for Moebius syndrome although physical and speech therapy can help to improve motor skills. It took Eva longer to learn to walk than other children and she can speak although her pronunciation of words is not always clear.

Alongside her regular hospital check-ups, Eva's doting grandad has now vowed to run a marathon to help his young granddaughter. Jonathan Watkins, 49, will run the Milton Keynes marathon on May 6 to raise awareness of Moebius syndrome and raise funds to help with her development.

The grandad of two said that Eva's diagnosis, and the fact she will never smile, was "traumatic" but her ability to overcome the challenges she's faced has inspired him.

Jon, from Porthcawl in South Wales, said: "Eva gives me the confidence and the inspiration to train for the marathon. Whenever I think 'I want to stop', I think whatever I'm feeling is what she feels everyday and so I'm determined to do it for her."

Eva has never smiled
Eva has never smiled
Grandad Jon is running a marathon for her
Grandad Jon is running a marathon for her

The family did not know that Eva would be born with Moebius syndrome after mum Jessica's pregnancy went smoothly. It was only after Eva was born in 2019 that the midwives noticed something wasn't quite right.

Jon, a senior process technician at Vale Europe, said: "When she was born, it was as if she was blood red in the face as she was trying to cry. There was no expression on her face as if she was choking.

"She wasn't able to feed from her mum she had no muscles to do so due to the paralysis of the face. The first week or two after she was born was spent carrying out various tests to try and diagnose what was wrong - it was pretty traumatic for all of us."

Jon said the not-knowing was the worst part due to how rare the condition is, and it wasn't until Eva was a year old that Alder Hey Children's Hospital were able to diagnose her. However, Eva hasn't let her condition stop her from enjoying what other children do and Jon said after some encouragement, she thrives especially in gymnastics.

The grandfather of two said: "Learning to walk wasn't as easy for her as any other child and she can speak but gets frustrated sometimes as she isn't always very clear. She tends to know she has to keep repeating herself but she is a little warrior. She can do the same as any other four-year-old, she just takes longer to master them and it's inspiring to watch."

Eva has a rare condition
Eva has a rare condition
Eva Hadley, four, at Christmas 2023
Eva Hadley, four, at Christmas 2023

Eva lives with her mum Jessica and dad Craig, both 30, in Caerphilly, Wales and her favourite Disney movie is Frozen and the ice princess Elsa. Jon said: "She's a proper little princess - she had a book day in school and couldn't decide which princess she wanted to be."

Jon is running the marathon in Milton Keynes, Bucks, in a bid to raise £3,000 to help Eva in her learning development and travel costs to and from hospital. She currently visits Alder Hey Children's Hospital for check-ups in her development and is due to see a speech therapist.

Jon explained that running was actually the last thing he wanted to do but after running a half marathon 12 years ago decided to give it a shot. While training for the gruelling run, he draws on Eva's commitment to overcome her own challenges to inspire him to keep going.

"I'll be on the wrong side of 50 soon and decided to give a 10k run a go last year. I also did the Cardiff half marathon and decided that I'd try and run a marathon - I would have had to gone through the ballot for the London one so settled for Milton Keynes.

"I ran a 17 mile practice on the weekend and it can be quite hard in places. Whenever I think 'I want to stop', I think whatever I'm feeling is what she feels everyday and so I'm determined to do it for her."

He added: "I've worked for this now and I hope all my hard work will pay off - if it gets the word across then that's a win. I'd like to think as well as Eva grows up and see how hard it must have been, she can take that little bit of strength from me as well. If people can look beyond face value of those with Moebius syndrome then they can see that they are no different from anyone else."

 
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