Julia Brown, 40 and husband Simon, 44, live in Oxfordshire, with their adopted daughter Niamh, 13, who has Foetal Alcohol Syndrome.
Since becoming parents to Niamh, Julia and Simon have set up the Foetal Alcohol Spectrum Disorders (FASD) Trust in order to inform about and campaign for better support for this series of wide ranging birth defects caused by women drinking alcohol during pregnancy.
This Sunday 9th September is FASD Day and the Trust is asking that people hold a Big BreakFASD at 9.09am (or even 9.09pm) to raise the profile and money for the charity. Simply invite all your friends round for a delicious Big BreakFASD for a donation.
Julia says: "There have been times when I've seen a pregnant woman drinking alcohol and I've wanted to dash over and grab the glass out of her hand. But of course, I can't go around acting like that!
"I have, on occasion, introduced my daughter Niamh to a pregnant woman who's drinking and I've explained to her how Niamh's problems are the result of her birth mother drinking alcohol through the pregnancy. It's so important to make women aware of the risks."
Unable to have children of their own, Julia and Simon adopted Niamh when she was a year old.
Julia says: "We knew Niamh had some developmental delay when we first took brought her home, but we were told 'it's only because she was born early and hasn't had the best of starts in life. Once she's in a stable, loving, two-parent family, everything will be fine'.
"So we fully expected Niamh to grow out of any development problems she had."
But by the time Niamh was three, and mixing with other children her age at nursery and playgroups, Simon and Julia could clearly see differences.
"Niamh couldn't hold a pencil or dress herself, for example, and she played alongside her peers rather than with them," explains Julia. " Physically, she would often fall over."
Niamh was tested for all sorts of conditions over the following two and a half years - including autism and ADHD. But although she ticked some of the boxes for several conditions, she never quite ticked them all.
"Then finally, one day in 2004, our consultant gave us the diagnosis," says Julia, "Niamh had Foetal Alcohol Syndrome as a result of her birth mother drinking whilst pregnant.
"We went home pretty much left to our own devices and not sure where to turn."
And so began what Julia terms the 'table tennis' game of trying to access help. "We'd go to the medical profession and ask what help we could get for Niamh, they'd ask us 'well, what help do you need?' and we'd say ' well, I don't know! What help can you offer?'
"Pretty soon, I realised that Simon and I would have to become the experts."
Julia trawled the internet, found a support group in Brisbane, Australia and eventually set up a local support group in Oxfordshire too.
"Things grew from there and we set up The FASD Trust in 2007," says Julia.
"Our aims at The Trust are to make Foetal Alcohol Syndrome better understood and to raise awareness of the dangers of drinking in pregnancy. We also want to see people with the condition better supported."
Niamh has no 'treatment plan' as such because brain damage can never be 'cured'
"It's just a case of managing her problems," says Julia.
"She has speech and language therapy and we home school her, but Niamh will never live an independent life.
"She has to be supervised at all times. She has no sense of stranger danger, for example and I couldn't let her cross the road alone. In many ways she's like a child less than half her age - she still can't dress herself for example - and we think she has probably reached a plateau and her full potential at achieving certain milestones and skills.
"So the future for Simon and myself is very much looking after Niamh.
"We don't dwell on the negatives though – we make the most of what our daughter can do rather than what she can't.
"In lots of ways she's a typical 13-year-old girl. For example, she loves horse riding and being a member of the local youth club.
"She likes singing along to Jessie J and she wants to be a supermodel. She has a penchant for shoes, handbags and having her nails painted. But at the other end of the scale she loves to play with dollies and toddler toys."
In the course of her work with The Trust, Julia comes across hundreds of other parents bringing up children with developmental problems like Niamh's. Some are mothers who drank alcohol before knowing they were pregnant but the majority are adoptive parents or grandparents of children from the care system and Julia thinks the problem is probably more widespread than official figures recognise.
"The World Health Organisation says that one in 100 children are affected by Foetal Alcohol Spectrum Disorders but if you look at children in the care system, the figure is probably much higher – some estimate that as many as 95 of the general population suffer from FASD.
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