A 4-year-old Welsh girl can’t smile, frown, raise her eyebrows, or even blink — thanks to a very rare cranial nerve condition without a cure.
Eva Hadley has been diagnosed with Moebius syndrome, which affects two to 20 newborns out of 1 million. The disorder is characterized by weakness or paralysis of the muscles that control facial expressions and eye movement.
Eva’s grandfather, Jonathan Watkins, will run the Milton Keynes Marathon in England on May 6 to raise nearly $4,000 to help Eva with her learning development and hospital transportation costs.
It wasn’t Eva was born in 2019 that the midwives noticed something wasn’t quite right.
“When she was born, it was as if she was blood red in the face as she was trying to cry,” Watkins, 49, recalled to SWNS. “There was no expression on her face.”
Watkins said Eva wasn’t able to breastfeed, and the first two weeks of her life were spent undergoing tests.
“It was pretty traumatic for all of us,” he said.
When Eva was a year old, doctors at Alder Hey Children’s Hospital in Liverpool were able to diagnose her. Though there’s no cure for Moebius syndrome, physical and speech therapy can help 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.
“She tends to know she has to keep repeating herself, but she is a little warrior,” said Watkins, a senior process technician at Vale Europe. “She can do the same as any other 4-year-old. She just takes longer to master” the milestones.
Watkins said after some encouragement, Eva is thriving in gymnastics. Her favorite Disney movie is “Frozen.”
“She’s a proper little princess — she had a book day in school and couldn’t decide which princess she wanted to be,” Watkins gushed.
Watkins says Eva’s strength gives him the confidence and 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,” Watkins said. “I’m determined to do it for her.”
The Porthcawl, South Wales resident has raised about $1,000 via his GoFundMe page.
“If people can look beyond face value of those with Moebius syndrome, then they can see that they are no different from anyone else,” Watkins said.
