When Rachael Ross gave birth to son Max, there was no indication from hospital staff that anything was untoward.
It wasn’t until blood tests two weeks later that she discovered he had Down syndrome.
In that moment, her whole world turned upside down.
But on the recommendation of doctors, Rachael and husband Ken contacted a support group, Down Syndrome Education International, which operated out of the Sarah Duffen Centre for children with Down syndrome in Portsmouth.
Rachael, who lives just ouside Horndean, says: ‘We were just in a whirlwind. You think you can’t control what’s going on and the support gives you a better outlook on the future.
‘It’s doing something positive for the children and helps you through it.’
As Max got older, Rachael became a trustee of DSEI and then set up the Down Syndrome Support Group, which supports children with Down syndrome and their families across the Portsmouth area.
Now it is urgently fundraising to try to replace services that were once provided by DSEI but have fallen victim to local authority cutbacks and a fall in donations.
In Down Syndrome Awareness Week – which runs until Sunday – the group is keen to increase understanding of the condition.
Rachael, 40, says: ‘About three years ago we decided there was a need for a social network for families, so we set up the Down Syndrome Support Group.
‘Families can become quite isolated and it’s really good to bring them together because that way you can make friends.’
Now called Footprints, the group has around 60 children as members, with a total of around 300 including parents and siblings.
It offers guidance for new parents, social opportunities for children to play together and make friends, coffee mornings for parents to receive and share advice, and guidance on services such as speech therapy and support.
Rachael says: ‘It’s for the children and their families and it all started with a social focus.
‘We provide some services, but we’re hoping that we’ll be putting in for more fundraising from other bodies and become a registered charity.’
She adds: ‘We have an information coffee morning, a baby group and a drama group for older children.
‘It’s to provide social support for all the families we work with. We also have early intervention groups for speech therapy.’
Yesterday was World Down Syndrome Awareness Day, with events happening across the country.
At the Sarah Duffen Centre, Footprints held a special Awareness Tea for the community.
Rachael explains: ‘We invited people from the local community who have helped us before for a very informal social gathering.’
Those attending included Pompey legend Linvoy Primus and radio presenter Paul Bunker, while Professor Sue Buckley, one of the world’s leading researchers into the development and education of children with DS, made a short speech.
This week families associated with Footprints have been doing their best to raise funds, such as holding collections at work.
Rachael says awareness and understanding of Down syndrome is improving.
‘Such a short time ago, maybe 20 or 30 years, the image was so negative.
‘Babies were put in institutions and people believed they couldn’t learn. It’s through raising awareness that we’ve helped stop that attitude.
‘But there’s still a surprising lack of understanding among some. It’s about dispelling the myths.’
She tells how one misguided mother had told her child not to sit next to a child with DS at school because ‘it was a disease and she would catch it’.
Today, with a large network of support, many children with DS can attend mainstream schools and hold down jobs afterwards.
Rachael’s son attends Horndean Infant School and regularly goes to the Footprints drama club at the Sarah Duffen Centre.
She says: ‘He absolutely loves it. He’s so excited on a Sunday to get to go with his friends to drama group.
‘The parents join in as well, it’s not just for the children.
‘From a social point of view it gives Max a fantastic opportunity. He’s developing his confidence, his spatial awareness and his speech.’
Rachael adds: ‘It’s all down to early intervention. I can’t stress enough that if you get the support while children are young, it will be much easier.
‘Things are looking really positive for children with DS. More and more are now in mainstream schools, and leading more normal lives.’
‘It’s lovely to talk to others’
Marie Tree, 49, lives in Baffins, Portsmouth with her husband Barry, 53, and children Zara, nine, Marcus, seven, and Aaron, who’s eight and has Down syndrome.
All of the children attend Westover Primary School in Baffins.
Marie believes that Footprints’ support is priceless for her family and Aaron, especially as he can attend a mainstream school.
She says: ‘It’s just lovely to talk to other people who understand and face similar problems. When you come up against prejudice, it’s always nice to speak to other people about it.
‘The fact that Aaron has learning difficulties doesn’t mean he can’t learn, and he can still contribute to the school.’
Footprints not only gives children the chance to interact and make friends with one another, but also lets parents share the different situations they’ve all had to face.
Marie adds: ‘Years ago, children with Down syndrome were locked away, but now it’s vital to raise awareness about it.’
’People need to know more about it’
Lucy Field, 40, and husband Charlie from Southsea have two children - Daniel, who’s six, and four-year-old Matilda, who has Down syndrome.
The children both attend St Jude’s Primary School, Old Portsmouth.
Lucy helped Rachael Ross to set up the Footprints support group in the Portsmouth area and says: ‘I think a lot of people don’t know very much about Down syndrome.
‘There’s limited help out there for families.’
She adds: ‘When I had my daughter, as with most of the families, I was given a low risk of my child having Down syndrome at three months with a nuchal fold scan.’
The test can detect any genetic problems with the pregnancy. But as Lucy was given a low risk, it came as a shock when she was told that her daughter had the condition.
She says: ‘To then be told she had it but she could probably attend mainstream schools and walk and talk and read and write was amazing.’
She adds: ‘I had no idea of any of that, so I think people do need to know more about it.’
Down Syndrome awareness week
Down Syndrome Awareness Week runs until Sunday.
It aims to promote the rights of those with Down syndrome and show that, with the right support, they can enjoy a full and happy life.
This year’s focus is on work opportunities for people with Down syndrome.
The Down Syndrome Association is promoting the WorkFit programme, which engages local employers with members of the community that have Down syndrome by helping them get jobs and encouraging them to visit their local job centre and meet the disability employment officer.
You can order an Awareness Week pack by e-mailing info@downs-syndrome or go to downs-syndrome.org.uk.
For more information on Footprints, go to footprintsds.org.
For information on Down Syndrome Educational International, go to dseinternational.org.
DOWN SYNDROME - THE FACTS
· Around one in every 1,000 babies born in the UK will have Down syndrome.
· It is caused by the presence of an extra chromosome in a baby’s cells. It occurs by chance at conception and is irreversible.
· Down syndrome is not a disease. People do not ‘suffer’ from the condition.
· People with Down syndrome will have a degree of learning difficulty.
However, most will walk and talk and many will read and write, go to ordinary schools and lead semi-independent lives.
· The average life expectancy for a person with Down’s syndrome is between 50 and 60.
Source: Down Syndrome Association