DSUK - Positive About Down Syndrome

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DSUK - Positive About Down Syndrome

Down Syndrome UK is a parent-led charity working hard to challenge outdated stereotypes and raise expectations for individuals with Down syndrome.

We do this by providing contemporary information and support to parents and professionals. Down Syndrome UK is a parent-led organisation providing honest support and expert resources to families and professionals, empowering every child with Down syndrome to thrive.

17/06/2026

This week, it’s Learning Disability Weekand this year’s theme is ‘Do you see me?’ It seeks to make sure that people with a learning disability feel seen, heard, valued and included 💛

Ahead of tonight’s World Cup game for England, here’s Tom getting in the spirit and taking time out of holiday to ask that question 💚

📷 A young man sits at a table wearing a Union Jack bucket hat and drinking a pint of beer.

Down syndrome, nobody told me, come on England, FIFA World Cup, positive about Down syndrome

16/06/2026

Today, mum Katie shares this with us 💛

Zoe can count to 10 using PADS resources, great preparation for starting school in September 💚

If your little one is starting school in September, you an find our information and resources here: https://downsyndromeuk.co.uk/transitions/ 🧡

And you can find our resource packs here: https://downsyndromeuk.co.uk/product/preschool-parent-pack/ 💛

📷 A little girl sits on a bed using Numicon to count to ten.

Starting school, milestone, rite of passage, parents supporting parents, Down syndrome school support, reception starters, supporting transition

15/06/2026

Earlier this week, DSUK's Healthcare Training Manager, Lucienne Cooper, attended Westminster as part of the National Maternity and Neonatal Collective, helping to ensure that the voices and experiences of families of children with Down syndrome were represented in discussions around the future of maternity and neonatal care 🧡

Lucienne joined colleagues from Friends, Families and Travellers and Neurodivergent Birth to discuss how maternity services can become more inclusive and accessible for all marginalised groups. She also had the opportunity to speak with National Maternity Advisor Michelle Welsh and Baroness Merron about the changes families need to see. A key focus of our discussions was the need for timely, balanced and evidence-based information following a prenatal Down syndrome diagnosis, alongside improved training for healthcare professionals in disability-informed communication. Our research with the University of Warwick found significant gaps in the support families receive during this time💛

We know there is still much work to do, but events like this ensure that the experiences of our community are being heard by those shaping policy and services. The event provided valuable time to connect with policymakers, advisors and partner organisations, sharing the experiences of our community and discussing practical ways to improve support for families 💚

It was encouraging to see a genuine commitment to listening to the voices of those with lived experience and the organisations that support them💛

Thank you to everyone who continues to share their experiences, contribute to our research and support our campaigning work. None of this is possible without the people who fundraise and donate for Down Syndrome UK. You give us a seat at the table - and we will always use it. Thank you🧡

📷 A collection of photos from an event featuring women stood together, watching a presentation and sat at a table.

Maternity matters, Down syndrome, positive about Down syndrome, DSUK, small Charity

14/06/2026

For this week’s we hear from mum Una 💛

Sunday cosy cuddles with her best buddy, just before her 4th birthday party 🧡

📷 A young girl lies on top of a Labrador dog.

Sunday smiles, girls best friend, Down syndrome, nobody told me, best pals

13/06/2026

For this week’s we hear from dad Jordan about the support his family received from friends running the Manchester Half Marathon for us 🧡

Bailey our brother in law, on the right and our friend Todd with our daughter Effie. They absolutely smashed the half marathon and raised loads of money for PADS! We’re so, so proud of them! Particularly considering Bailey only started running about 6 weeks ago, but when a space came up he wanted to do something for Effie so it was a fantastic achievement! 💚

Bailey said: Last year, I became an uncle. My amazing sister-in-law and brother-in-law welcomed the most beautiful little girl into the world — my niece, Effie. She was born with Down syndrome, and from day one she has brought more joy, laughter, and love into our lives than we ever could’ve imagined 💛

Effie has the cheekiest smile, the biggest personality, and a magical way of lighting up every single room she’s in. Safe to say, we’re all completely wrapped around her tiny finger 🧡

Charities like Down Syndrome UK have been incredibly important for our family. Offering support, guidance, and a real sense of community when it matters most 💚

From early years support to things like Makaton sessions and developmental therapies, they do amazing work helping families navigate their journeys with confidence and positivity 💛

So, while running 13.1 miles felt like a terrible idea… it’s nothing compared to how worthwhile this cause is 🧡

What a fantastic achievement! You can show your support here: https://www.justgiving.com/page/bthompson-dsuk?utm_medium=FR&utm_source=CL&fbclid=PAVERFWASM6TBleHRuA2FlbQIxMABzcnRjBmFwcF9pZA8xMjQwMjQ1NzQyODc0MTQAAaeBh7RYQjWeqQiG47woeq7mNQu5dRkYsNtf3mCR-TzfM8dSRf_aj_Ibnta-Mw_aem_xuqpuA2ig-i-V8X4Zo2pAA

📷 Two men hold a baby between them along with two signs of support that read: Love doesn’t count chromosomes and run funcle run.

Run for us, fundraising, small charity, positive about Down syndrome, show your support

12/06/2026

Today we hear from mum Sev about how our toilet training programme helped little Asher 💚

We can’t thank the team at Pants4School enough for guiding us through Asher’s potty training. We did the boot camp and got individualised advice from the start and all the hard work we put in paid off as he was in pants at age 3. Thank you so much PADS! 💛

You can find our toilet training information and resources here: https://downsyndromeuk.co.uk/parents/toilet-training/ 🧡

And information about our next toilet training bootcamp that starts next week: https://downsyndromeuk.my.site.com/community/s/supporter-page/a0x8d000001LcG7/toilet-training-bootcamp 💚

📷 A little boy with glasses and his fingers in his mouth stands next to a guitar.

Down syndrome, PADS impact, toilet training help, school ready, Down syndrome diagnosis

11/06/2026

Secondary teachers - are you supporting a pupil with Down syndrome next year?

Our Secondary Education Programme launches this September, giving schools evidence‑based strategies and specialist guidance.

Join the mailing list to find out more: https://secure.downsyndromeuk.co.uk/sign-up

10/06/2026

This week is British Heart Week so today we hear from mum Vikki about how our Heart Buddies scheme helped little Clemmie 💛

Our daughter had surgery to correct her VSD when she was 16 weeks old. I didn’t realise it at the time, but it was the anniversary of her embryo transfer. After six years of trying, and four failed IVF cycles, it might have seemed like a good omen.

To tell the truth, Clemmie never seemed that ill to us before the surgery. Although her VSD was quite large, it was partially covered by some tissue from a heart valve which meant she never got really breathless, and her muscle tone was relatively good. It’s only now we look back that we can see how small and pale she was.

The day of the surgery we had to arrive at hospital early. Clemmie had to have an empty stomach so she was clearly hungry, but she was so good, playing with her dad and cuddling into us in her little gown. We took her through to the anaesthetists and stayed with her while they put her under, and then we left her. It was one of the hardest things I’ve ever had to do.

The surgery lasted about 5 hours. We had spoken to our heart buddy, and they advised us to keep busy, but the feeling of relief when we got the call to say that all had gone well was overwhelming.

It was hard to see her after surgery, puffy and swollen and with countless wires and tubes coming out of her, but from the moment we got that call we were never really scared for her - we knew she was in good hands and we just had to give her time to heal. We spent five nights in PICU, followed by two nights on the ward.

She’ll have annual checks, but we don’t anticipate any further surgeries. We’re so proud of her, and so grateful to all the amazing medical professionals and PADS’ Heart Buddies we encountered along the way.’

💚You can find our resources about heart health (including our heart buddy scheme) here: https://downsyndromeuk.co.uk/health/heart/ 💚

📷 A graphic in the shape of a heart which explains the heart buddies scheme.

Heart health, Down syndrome, parents supporting parents, emotional support,

09/06/2026

This week is British Heart Week so today we hear from mum Jessica about how our Heart Buddies scheme helped little Eben 💛

Almost 3 months ago, our beautiful little boy had open heart surgery at the Leicester Royal Infirmary. Although we had wonderful support from family, friends and from the hospital, it was, without a doubt, the most traumatic time of our lives.

We reached out to Positive About Down Syndrome, and through their Heart Buddy Scheme we were matched with families who had experienced the same surgery, at the same hospital, and were on hand to answer all of our questions, and help us navigate the process.

Being able to talk to people who understood made such a difference. They answered our questions honestly, offered emotional support, and helped us feel far less alone during a very difficult time.

We are so grateful to PADS for all the support we received. Eben is recovering well, like the superhero he is 🧡

💚You can find our resources about heart health (including our heart buddy scheme) here: https://downsyndromeuk.co.uk/health/heart/ 💚

📷 Photo 1: A little boy lies asleep in a hospital bed with a dummy in. Photo 2: A young girl and boy stand either side of Mickey Mouse holding his hands.

Heart health, Down syndrome, parents supporting parents, emotional support,

Address

Leamington Spa

Website

https://positiveaboutdownsyndrome.co.uk/, https://downsyndromeuk.co.uk/, https://teemill.downsyndromeuk.co.uk/

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