ONE of the biggest joys in life must be to see your child smile for the first time.
But for one family this is a pleasure they cannot enjoy because little Isaac Hughes has an incredibly rare condition which causes paralysis of the facial muscles.
The five-year-old, from Mold, cannot laugh or smile when he’s happy, cannot blink on reflex, was unable to walk until he was three and struggles to articulate his emotions through words as his speech has also been affected.
But his doting mum and dad Ceridwen and Philip say it does not detract from his naturally sunny nature.
“The syndrome affects Isaac’s ability to speak as well as smile and this causes considerable problems although he is such a happy, strong-willed, tenacious child that nothing stands in his way of telling a story, even if he can’t say the actual words,” Ceridwen said.
“It can be very frustrating and every single day you come across a different challenge.”
Isaac, a pupil at Ysgol Glanrafon, was diagnosed with Moebius syndrome at eight-months-old making him one of only 200 people in the whole of the UK with the condition.
According to Mrs Hughes, to date there is no cure and no research has been carried out to identify a cause so there is no way of preventing it from affecting other people.
That is why the family is fighting hard to support the Moebius Research Trust, whose motto is “we smile from our hearts”, raise £250,000 so research can begin.
Ceridwen added: “It is a very rare condition and this is partly why it was so long until his condition was diagnosed.
“The main problems caused by the condition include paralysis of the muscles that control movements of the face and eyes.
“The paralysis happens because the nerves that make these muscles move, called the seventh and sixth cranial nerves, are abnormal.”
The family, which also includes Isaac’s brother nine-year-old Theo, joined others from across the world for Moebius Awareness Day which was established three years ago to try to raise awareness of the condition, which can also cause hearing difficulties, eye sensitivity due to the inability to blink or squint, and missing limbs, fingers or toes.
Isaac’s uncle David Baynton-Power, who is the drummer for indie-rock band James and is from the Wrexham area, is using his fame to boost the cause and is now patron of the charity.
He said: “My sister–in-law told me about the Moebius Research Trust and how it is trying to raise sufficient funds to carry out research into this very distressing condition. When I was approached by the charity to be a patron I was happy to help.
“This is such a worthwhile cause.”
Dave has donated a rare bodywarmer from James’ 1998 arena tour, which was only supplied to group members and staff, to help raise extra money.
To be in with a chance of winning the prize visit the Moebius Research Trust Facebook page, ‘like’ and share it and a winner will be announced at the end of February.
To donate to the cause visit www.moebiusresearchtrust.org.