Down Syndrome Celebration Blog – Portsmouth Down Syndrome Association share their stories.

Rachael Ross MBE (Chairperson and Charity Director)

I co-founded Portsmouth Down Syndrome Association with two other parents after the birth of my son, when it became very quickly apparent that there was a lack of specialist provision in the area. We worked hard to raise funds, and within 6 months we had raised what we needed and began t offer services to members. The charity has grown exponentially since conception, and we are now one of the largest service providers in the UK, but quite remarkably the charity continues to be largely managed by full and part-time volunteers.

I have loved working as a full-time volunteer for the past 12 years and every day is different! We have a small but brilliant team of dedicated trustees and we are very well supported by a huge network of volunteers, and this enables us to provide the wide range of support that we do. It’s very hard work and long hours, but it’s hugely rewarding to see first-hand the positive difference we are making to the lives of individuals with Down syndrome and I never fail to be blown away by their achievements. I feel so proud to be part of such an outstanding organisation, and I’m very proud of all we have achieved together, with the support of our community.

We have seen some advances for people with Down syndrome over recent years, but events during lockdown have further illustrated there is still great need to raise awareness about Down syndrome and learning disability, so I am very much looking forward to Down Syndrome Awareness Week.

Alice Osborne (parent and volunteer)

When Teddy was diagnosed with Down syndrome, we didn’t know what this would mean. My husband and I each had a different understanding of what Down syndrome was, but we both agreed we needed support. The next day, we contacted Portsmouth Down Syndrome Association and chatted with the New Parent Liaison team and met them for a coffee. It was so important to us.

We started accessing the coffee mornings, social events and met other families and they and the charity guided us through the new world of services and health professionals. When Teddy was 9 months old, we were invited to attend the Baby Early Development Groups. Every month, Teddy and I would attend these groups and I would learn how to support his development and ensure that he met his goals. This was invaluable to our family and it was wonderful to see the other children develop too. That year 6 of my friends and family and I ran the Great South Run to raise money – it felt good to be actively supporting Portsmouth DSA.

When Teddy started nursery, he was able to access the Nursery service, and they have helped support nursery to ensure that Teddy is included and achieving his potential there too!

This September Teddy will start school, and I am so happy to know that Teddy will be able to access the schools service, and that he and his schools will have specialist experts supporting them throughout his education and into adulthood.

I started to volunteer with the charity – they helped my family and I wanted to ‘pay it forward’ and share the support. As a volunteer, I have developed my skills in areas that I never would have tried before, and I get to be part of an inspiring team. Volunteering for Portsmouth DSA really is a passion of mine now.

Our membership of Portsmouth DSA is more than a service or support, it’s being part of a bigger group, we are stronger together, and together we can advocate to ensure real opportunities and inclusion for our children, not just in school but all the way through society! I am so proud to be part of such a wonderful charity with such active members.

Max (Portsmouth DSA Charity Ambassador)

Hello. My name is Max, and I am 16.  I like cycling, travelling and sport and I am part of the Special Olympic regional team. I really enjoy being a member of Portsmouth Down Syndrome Association, and I have lots of friends there like Sam, Evie and Lizzie who is a world record holder in freestyle swimming. I see my friends at our virtual communication group sessions. I have been in mainstream school since I was 4, supported by the charity School Advisory Service.

I like being a charity ambassador for Portsmouth DSA. I help out at events and fundraisers. Some of us usually run the 2.5k and 5k runs each year at the Great South Run, and I have raised thousands of pounds for the charity. I miss seeing everyone and can’t wait until we can all meet again after lockdown!

To find out more about Down Syndrome and the services in Portsmouth City – Click Here!