A LITTLE girl who cannot smile is inspiring fundraising for research into a condition that affects only 200 people in the UK.
Ana Carys, three, from Poole, was born with Moebius Syndrome, in which the nerves controlling eye movements and facial expressions are either missing or underdeveloped.
People with the condition often have other health problems. Ana has poor muscle tone, uses a frame and special boots to help her walk and wears a helmet in case she falls.
But the Canford Heath youngster swims, attends music classes and pre-school, and is learning sign language.
“Ana can’t smile, blink automatically or look laterally. She has a 25 per cent squint in both eyes,” said her mother Esther.
Esther met her husband Gwyn when she came to the UK from Spain 20 years ago to study English. The pair also have a six-year-old son, David.
The family speak English, Welsh and Spanish at home, and use sign language.
Esther said Ana was two and a half months old when she was referred to hospital because of a viral infection in her airways.
“During a routine check, the doctor noticed she wasn’t blinking and didn’t follow the light. At night her eyes were open when she was asleep, but my sister had that, so it wasn’t such a strange thing,” recalled Esther.
“The consultant managed to get a lot of tests done while they were treating the bronchiolitis, but couldn’t find any abnormalities.”
Tests showed Ana was not blind, and was sent to the child development centre.
“She couldn’t move around or hold anything. They thought it could be development delay.
“They did more tests and when she was two, a professor at Southampton said he was pretty sure Ana had Moebius Synd-rome,” said Esther.
The syndrome, first described in 1888 by neurologist Paul Julius Moebius, is rare. Some children are wrongly assumed to have a learning disability because of their inexpressive faces, squint and tendency to drool.
Esther said Ana’s progress was “amazing”, adding: “We think she understands us because she responds. She tries to say words.”
Ana’s music teacher Lucy Chewins raised £161 for research by holding a musical fun morning at Carvers Music School. She called Ana “inspirational”.
“Because she can’t smile and can’t talk properly, people that don’t understand think she’s mentally disabled,” said Lucy.
“She takes part in the lessons, plays drums and loves my flute. She won’t get left behind in class. She answers things faster than the other children, but with sign language. She’s very bright and very feisty.”
Another of Ana’s friends, Graham Knott, aims to raise £1,000 by swimming around Brownsea Island within three hours on August 19. He can be sponsored on virginmoney giving.com/makeithappen or by texting JIFF 99 £5 (or £10) to 70070.
The Moebius Research Trust has so far raised half of its £250,000 target to start research. Visit moebiusresearchtrust.org.
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules hereLast Updated:
Report this comment Cancel