Sue and Jen Blackwell

Sue Blackwell, DanceSyndrome Co-Founder and Trustee, helped set up the charity with her daughter Jen, who happens to have Down’s syndrome. Jen was unable to find suitable training to help her pursue her dream of a career in community dance, so DanceSyndrome was developed to help Jen and others like her who didn’t want their disabilities to stop them from following their dreams.


Here Sue writes, whilst on holiday in Ragusa, Sicily, about how her life has changed now that Jen is more independent and how they have both realised the value of having good friends to support them along the way.



“How unbelievable. Here I sit in paradise with no responsibilities, other than to myself. It is so unreal. I feel as if I should pinch myself every morning to check that it’s not some kind of dream that is about to be shattered. But no. I’m aware of the comings and goings of others but they don’t have a clue what I’m up to unless they put themselves out to come and see me. Perfect.


The mix of people in Ragusa is wonderful. People from all walks of life with every socio-economic demographic represented and it makes for great socialising! I’ve never been part of anything remotely like it. I am so unbelievably privileged not only to be here supported and welcomed by a lovely community, but most of all to be able to be free and be my own person. That’s what’s so incredible. Jen really doesn’t want me cramping her style and getting in the way. I’ll probably ask awkward questions and have unreasonable expectations!


I stopped being Jen’s main carer only 4 years ago. In that time she’s blossomed into a person in her own right though I certainly recognise that there will always be crunch points, times when she falls off her tightrope and we need to get creative to arrest her fall into the abyss. She continues to be her own worst enemy in many respects, but with the right mix of people in her life, it’s been shown without doubt that she can thrive, be her own person, live life as an independent person (perceived), be respected and valued for who she is, use her talents and assets in a way that is setting the world alight, she has real friends who will stand by her when the chips are down and fathom a way through, but most importantly, she’s happier and more fulfilled than she’s ever been. How many parents with offspring with learning disabilities can say that? And how fantastic! Long may it last!!


My closest friends have played their parts in being there for Jen, in supporting her on her journey, and being there for me. Without their support I would not have had shoulders to cry on, and I’ve certainly needed those. They’ve seen a lot of the grief and the trauma probably much too close up and personal, and I am indebted to them for putting up with that. At those times when there was no clarity, no path to tread, and seemingly no one remotely interested in helping I felt so helpless. On many an occasion I’ve had no idea which way to turn or what to do for best. Cups of tea help, but mostly time to speak freely without fear of retribution. That’s what makes a real friend. I owe them so much, much more than they will ever know. The joy of friendship is unquantifiable. I only hope that one day I can repay them, even if only half as much. They are a rock for me, a rock I will treasure for ever. I must say “Thank you from the bottom of my heart”.”


Jen herself spoke recently at an event in City Hall, London, about how DanceSyndrome has changed her life, giving her a voice to be heard, making her feel valued and respected and enabling her to form true friendships for the first time in her life.


Social inclusion and building relationships is a vital outcome of the work that DanceSyndrome does. If you would like to get involved with our work, we are always looking for more volunteers and you can find out more on the Become a Volunteer page of our website.


We also need donations to help us to continue to provide workshops, training and outreach work in Lancashire and other parts of the UK. All donations make a difference to small charities and we are grateful for all your support! There are many ways to donate. You can donate via Just Giving, Local Giving, Paypal or by text – Text “DANS10 £5” (or the amount of your choice) to 70070

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