LITTLE EVA WILL NEVER SMILE DUE TO RARE CONDITION
ALITTLE girl born with a rare neurological condition will never be able to smile. Eva Hadley, four, has been diagnosed with Moebius syndrome – a condition which only affects 200 people in the UK.
It 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 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, 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 every day and so I’m determined to do it for her.”
The family did not know Eva would be born with Moebius syndrome after mum Jessica’s pregnancy went smoothly. After she was born in 2019, midwives noticed something wasn’t quite right.
Jon, a senior process technician at Vale Europe, explained: “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 was and it wasn’t until Eva was a year old that medics at Alder Hey Children’s Hospital in Liverpool 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.
He 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 watch.”
Eva lives with her mum Jessica and dad Craig, both 30, in Caerphilly, and her favourite Disney movie is Frozen – and she loves 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.”
He is running the marathon in an effort to raise £3,000 to help Eva in her learning development and travel costs to and from hospital. it’s inspiring to
She currently visits Alder Hey for check-ups in her development and is due to see a speech therapist.
Jon explained running was actually the last thing he wanted to do, but after running a half marathon 12 years ago, he decided to give it another shot.
While training for the gruelling run, he draws on Eva’s commitment to overcome her own challenges to inspire him to keep going.
He said: “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.”
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 sees 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.”