MOEBIUS SYNDROME IN THE NEWS: WORKING ONE DAY AT A TIME

A family in the UK recently seeks to raise money for their young daughter with Moebius Syndrome.  Fund-raising--it can be an important thing, and a way to raise awareness and help your family do more for your Moebius child or relative.  Something to think about.  Read more about what these guys are doing:

******************************

An Aylesbury family are hoping to raise as much awareness of their baby's rare condition as possible today.
Back in October, we told you about Isabella Young who has Moebius Syndrome, which means she has no control over the left side of her body.
Today they're raising money for Moebius Research.
Mum Sara Hill told us why research needs to happen:

"Quite a lot of problems and illnesses can be picked up during a pregnancy, but this is one of those that can't be.
"You have to rely on a clinical diagnosis and it would be so great to find out about this when they're younger."

Today's event at Bucks County Council's Sports & Social Club in Aylesbury from 12-4 sees local businesses with stalls, games and food, as well as a raffle.
All the cash raised will go to researching the rare condition.
It took several weeks for doctors to work out what was wrong with Isabella, diagnosing several conditions before one consultant at the John Radcliff Hospital in Oxford spotted the symptoms.
She's now under 11 consultants at three different hospitals, already having made 3 trips just this week.
The condition also means she can't blink with her left eye or move her eyes from side to side. She'll soon have to be fed directly through her stomach.
There are just 200 Moebius patients across the UK, so very little is known about it or even understood by doctors.
The Moebius Research Trust is based in Scotland and aims to find answers to both doctors' and parents' questions.
Sara added:

"Just to have a reason why she is the way she is, what the problems are.
"And that's what the charity are aiming to do. Aiming to find the causes. even, not a cure as I know not everything can be, but to stop people being prevented being diagnosed."

To find out more, visit the Facebook event page here: https://www.facebook.com/events/472401282875860/?fref=ts
Sara told us what a breakthrough would mean:

"To have some guaruntees, to not be told they don't know something.
"If I ask them 'will she walk?' and they say they don't know - if they had more knowledge they might be able to give me that answer."

*************************************