Down Syndrome Awareness Week: Why nothing will stop Lizzie from winning

The 15-year-old from Portsmouth is the proud owner of a world record and doesn't let her Down syndrome stand in her way of success.

Mum Kate said: ‘Last year was an amazing year for Lizzie. She set a new Down Syndrome World Record for the 25m Freestyle and proudly represented Great Britain at the Down Syndrome World Swimming Championships in Nova Scotia, Canada where she won bronze and silver medals.

‘She approaches every activity with a smile on her face and a positive attitude, and she is a fantastic role model for any teenager.’

Lizzie is a member of Portsmouth Down Syndrome Association and has received help every step of her journey from supporting her education to attending communication groups, making new friends and swimming competitively.

She entered her first event five years ago and is now part of the Down Syndrome Swimming Great Britain (DSS-GB) squad and regularly competes at National and International level.

Kate said: ‘Lizzie lives life to the full, making the most of every opportunity given to her.

‘Despite a complex range of gross motor difficulties, including low muscle tone and severe joint hypermobility, she trains five times a week. For Lizzie, it’s all about her ability not her disability.’

On Down Syndrome Awareness Week, Lizzie's motto about ability and not disability could not be more true for Portsmouth Down Syndrome Association Chair Rachael Ross.

She said: ‘It’s almost incomprehensible to us now, that within living memory, children born with Down syndrome were deemed ineducable and consequently were denied that most fundamental of childhood rights; an education.

‘We now understand that children with Down syndrome have the most incredible potential, and with the right specialist support they are being successfully educated alongside their peers in mainstream education and are genuinely valued and productive members of their communities.’

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WHAT THE PORTSMOUTH DSA DO?

Charity Portsmouth Down Syndrome Association supports hundreds of individuals across the area including 13-year-old Ethan Phillips.

Mum Katherine described feeling ‘fortunate’ to have been helped by the charity for many years.

She said: ‘ We were initially overwhelmed with sadness when given Ethan’s diagnosis and this would have been very different if we had a better understanding of what our lives would be like.

‘Portsmouth DSA work hard to raise awareness, change outdated attitudes and highlight that our children and young people are smashing stereotypes. They see the ability, celebrating every person’s achievements and uniqueness, whilst helping them reach their potential.’

Ethan has raised thousands of pounds to give back to the organisation through the Mini and Junior Great South Run.

Katherine said: ‘We’re extremely lucky to have such a brilliant son who’s his own person, brings heaps of fun and meaning into our lives, gives us perspective and teaches us new things every day.’

The teenager enjoys participating in the Arts Awards through Portsmouth DSA’s fortnightly drama class, and he attends the charity’s social communication groups.

The charity’s School Advisory Service visits mainstream schools across the area including Ethan's to assist with inclusion and provide any advice

Katherine added: ‘We’re proud to be a part of the Portsmouth DSA community and we’re proud of Ethan. We have the same kind of family life as everyone else made up of happy, sad, easy and stressful times and everything in between but with (my heart tells me) a little bit of added magic.’

Chair Rachael said: ‘At Portsmouth DSA we understand that raising awareness is key.

‘Alongside our other activities, we provide specialist training for NHS staff and have been lobbying for this to be made mandatory for all health care workers, along with the introduction of a universal health care plan for individuals with Down syndrome.

‘We collaborate with national organisations such as BAFTA to further the inclusion of people with Down syndrome in the media.

‘Inclusive education has helped to dramatically improve society’s attitude towards Down syndrome, fuelled by more positive portrayal in all areas of the media. Trendy high street retailers are featuring individuals with Down syndrome in their advertising campaigns, actors with Down syndrome are familiar in prime-time TV dramas such as Coronation Street and Call the Midwife, and we have seen an explosion on social media of all things ‘Down syndrome’.

‘But there is still a long way to go.’

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PORTSMOUTH’S SECRET

Celebrations of Down Syndrome Awareness Week are taking place across the world but for the Portsmouth Down Syndrome Association there is another special reason to mark the occasion.

Chair Rachael Ross said: ‘Most people are unaware of the pioneering role that Portsmouth has historically played in altering the path of education at a global level for individuals with Down syndrome.

‘Few realise that much of the research during the 1980s onwards which was a catalyst for this change, proving that individuals with Down syndrome were in fact able to able to read and could be successfully educated, came out of our centre in a small backstreet in Portsmouth.

‘Here, the tireless work of pioneering educationalist Professor Sue Buckley OBE and her team changed the lives of these individuals for the better.’

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SUPPORT FROM THE COMMUNITY

FOR every new ‘like’ or 'follow’ on Facebook, Twitter or Instagram, solicitors Warner Goodman will donate £1 to Portsmouth Down Syndrome Association.

The firm has raised £14,000 over the last six years it has sponsored the awareness campaign.’

Partner Claire Battye said: ‘‘The Awareness Week is always an exciting time for us.

There is a wonderful energy during those few days, and the week also kick starts our other

fundraising activities for the charity. We are very proud to support Portsmouth DSA and the

amazing work they do.’

Schools and organisations across the area will be showing their support for the charity by

holding an awareness event or fundraiser, including charity partners Airbus and

Sainsbury’s Commercial Road, and Portsmouth Grammar School.

The Spinnaker Tower will mark this special occasion by being lit up in yellow and blue which are the international colours representing Down syndrome.

Portsmouth DSA Chair Rachael Ross said: ‘We are always blown away by the support and encouragement we receive from the community each year. We just couldn’t do what we do without them.’

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Did you know?

- Having a baby with Down syndrome can happen to any parent. It is caused by

the presence of an extra chromosome in a baby’s cells, but no one knows why

- Around one in every 800 babies born will have Down syndrome, and

approximately 40,000 individuals in the UK have the condition

- Down syndrome is not an illness or a disease, and individuals do not ‘suffer’

from Down syndrome

- Labels matter! Individuals with Down syndrome are people first. Try to avoid

saying ‘Down’s child’ or describing the condition as ‘Down’s’. A child with Down

syndrome is preferable if you have to mention it.

- People with Down syndrome have a learning disability, but this does not mean

that they can’t learn with the right support.

- People with Down syndrome are individuals. They have friends, they go to

school to learn, they join local clubs, they have interests, hobbies and talents,

they have dreams and aspirations, and they want make a positive contribution to

their communities.

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