Wednesday 23 August 2017

'Some people think she is just a rude teen' - mum of girl who can't smile wants to connect with others with rare syndrome

A support group for people with a rare condition that prevents facial expression is hoping to reach out to more sufferers.

Teegan Bracken O'Reilly (16) has Moebius Syndrome
Teegan Bracken O'Reilly (16) has Moebius Syndrome
Laura Larkin

Laura Larkin

The mum of a teen with a rare condition which means she can’t smile or show any emotion has revealed people often think her daughter is simply “a rude teenager”.

Teegan Bracken O’Reilly (16), from Tallaght in Dublin, is one of just a handful of people in Ireland who have Moebius Syndrome.

The rare neurological condition affects movement in the face and prevents  sufferers from being able to make facial expressions.

The teen, who is due to sit her leaving cert this year was diagnosed when  she was 18 months old.

Doctors predicted she would encounter a number of developmental delays but  her mum said she has proved them wrong.

“We were told she might not walk and that she probably wouldn’t talk.  That’s horrible to hear when you have a little baby.

“But she has always been in mainstream schools and she is now planning to go onto college,” she said.

"She lives a normal teenage life except for what people cans see, that she can't make  a facial expression.

Teegan Bracken O'Reilly (16) with her mum Lesley, dad Anthony and brother Kane.
Teegan Bracken O'Reilly (16) with her mum Lesley, dad Anthony and brother Kane.

"So some people would think 'oh she's always very grumpy' or she is a rude teenager that just looks blank or distant to a conversation but as you get to know her you learn to pick up the different traits."

"People can think she is looking blank during a conversation or that she is just a normal grumpy teenager."

After years of thinking their family was the only one affected Lesley met  fellow Tallaght mum Mags Purtill Fennell, whose son Dexter (4) was also diagnosed with the condition.

The two families joined forces and set up a support group for people in  Ireland in the hope of raising awareness of the condition.

Dexter Purtill Fennell (4)
Dexter Purtill Fennell (4)

They were thrilled when 13 people got in touch.

“When you think about the odds and to have 13  people in Ireland who have it is a very big number,” Lesly said.

“It was a really great experience for everyone to be able to sit and have a  conversation about our experiences.

“It was especially great for parents of the younger children to realise that it’s not all doom and gloom."

The families are also hopeful that they can raise more awareness among the medical profession in Ireland, in the hope of encouraging more research or doctors to look at specialising in the area.

Limb deformities and balance problems are other problems which can be associated with the syndrome.

There are a number of symptoms which can be spotted in babies which point to the syndrome.

Some of the families who attended the first Moebius Ireland event in January 2015
Some of the families who attended the first Moebius Ireland event in January 2015

“They have no expressions, when they cry there are no tears, they can be like a doll. Their eyes don’t move properly and their ears are not level with their eyes,” Lesley said.

A doctor suggested to Lesley when Teegan was just two days old that she  should be examined for Moebius Syndrome but it was still 18 months before  she was officially diagnosed.

“We hope that one day there will be at least one doctor in Ireland who will have a specialist knowledge of Moebius Syndrome, so it will save families 18 months or two years of anguish of not knowing what’s happening with their babies,” she said.

Moebius Ireland will host a meet-up on January 29 from 2pm to 6pm in the Louis Fitzgerald hotel on the Naas Road and members will be hosting various events around the country to raise awareness of the condition.

Anyone who would like to get in touch with the newly formed group can  contact them on moebiussyndromireland@gmail.com or on Facebook at Moebius Ireland.

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