WHEN Donna Jackson set up a Facebook page about her daughter, Frankie, it was aimed at friends and family.

She had no idea that four and a half years later, she would be blogging to a global audience of more than 17,500.

Donna launched the page, Frankie says relax about T21, after some negative reactions from strangers to her daughter's Down's Syndrome.

"I hadn't had any negative reactions until I took her along to a baby sensory group," says the 35-year-old nurse from Hampshire.

"Then I found that I was I sat in a circle with her with all the other babies and their parents, and I could see all the other adults were staring at her with expressions of shock or sadness. I left in tears and I had to stop going after a few weeks because it was just too upsetting."

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Frankie as a newborn

Donna was even more shocked when a stranger approached her while she was having lunch and asked about Frankie, now aged five.

"Someone came up and said 'oh, did you know you were having one of them?'!

"I froze for a moment and then said 'what, a baby?'

"Then I ran into a mum of an adult with Down's Syndrome who I knew, who said 'I heard about your problem.'

"I thought 'that's enough, people need to be educated, so I started the Facebook page."

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Donna and Frankie

Since then, Donna has gone on to be a campaigner and advocate for people with Down's Syndrome, from speaking directly to mothers who have been told there is a high chance that their unborn child has the condition to fundraising for various groups and charities.

But much of her work has been to engage with people via social media, through the Facebook page, educating, raising awareness, and challenging negative stereotypes.

Having had a standard blood test during her pregnancy, which indicated that there was a high chance that her baby would have Down's Syndrome, Donna declined further testing, and assumed that her baby probably did have the condition.

"When I gave birth to her, I looked at her and said, 'oh, she's got Down's Syndrome,' and the midwife looked relieved that she wouldn't have to tell me, so I've never had the negative conversations that I've heard so much about since," she says.

"People tend not to hear 'congratulations' when they have a baby with Down's Syndrome. One woman told me that she had twins who were quite premature and were rushed away after they were born.

"They came back and started to say 'we are so sorry to have to tell you...' and she genuinely thought one of them had died, rather than that one had Down's Syndrome."

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Frankie with her sister, Riley, mum, Donna, and dad, Scott

Donna adds that while she can find the ignorance and ill-judged comments of members of the public about Down's Syndrome irritating, it is the attitude and language of many medical professionals that particularly irks her.

"I say this as a medical professional myself, people in the medical profession need to be re-educated in how they speak to people about Down's Syndrome.

"It doesn't take much to say 'congratulations, on your beautiful baby; we have found that she has signs of Down's Syndrome,' rather than 'I'm sorry to tell you that she has Down's Syndrome,' or changing the language when giving the results of blood tests when you're pregnant," she says.

"I've known people to be handed leaflets about abortion and adoption when they get test results, and I'd love to be able to sit down with that person with Frankie for 20 minutes, to show them that having a child with Down's Syndrome isn't anything to be afraid of."

Frankie was diagnosed as having autism when she was three, and is non-verbal.

Donna says that in many ways, this is more challenging than her having Down's Syndrome, as it is less predictable.

"Even with that diagnosis, I still wouldn't change my daughter," she adds.

"I hate the thought of people thinking of her negatively."

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Frankie as a baby

Donna was delighted to get involved with the charity Wouldn't Change a Thing, which is working to make negative perceptions of Down's Syndrome a thing of the past. This included her taking part in the 50 families video, which went viral last year, as well as volunteering for the charity behind the scenes.

She has also met up with a number of pregnant women whose baby was thought or known to have Down's Synrome and says that they have all felt much calmer about the diagnosis afterwards, and hopes that by sharing her family's day-to-day life via her Facebook page, she is reaching many more people, to help change perceptions of Down's Syndrome.

She was amazed when the page began growing in popularity, with strangers all round the globe now following her family via Facebook. Running the page and responding to messages is very time consuming, but she is very happy to be reaching so many people, and hopefully challenging their negative stereotypes about Down's Syndrome.

"We have our difficult days and our good ones, but what child doesn't?" she says.

"But we are helping people to realise that you can live a normal life with Down's Syndrome.

"I am pretty open about everything. We have the same worries as other parents.

"In fact, Frankie was such an easy baby that she set me up to fail with her little sister Riley, who was much harder by comparison, as she was hitting all her milestones much earlier, which came as a bit of a shock to me and Scott!

"My message to people is to chill out, our children are beautiful," says Donna, adding that Frankie has been signed up with a modelling agency.

"I do think attitudes are improving," she adds.

"When Frankie was born I felt like everyone was talking about the Down's Syndrome, rather than her, but that's improved.

"It's really important that people see the child, not the diagnosis."

* World Down Syndrome Day will take place on March 21 this year. The event is a global awareness day, held by the United Nations since 2012. Frankie says relax about T21 will be supporting three organisations for the day: The Down's Syndrome Association, Wouldn't Change a Thing and Icknield School. They will be holding a charity bike ride, raffle, auction and cake sale. For more information, visit the Facebook page. If you can help with fundraising, email frankiesaysrelaxaboutt21@gmail.com.

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