” Life may not be the party we’d hoped for, but while we’re here we should dance! “
In 2015, in response to an invitation to take part in a charity ball, CamRARE took the step to create a small Cambridge based dance group for children with a range of rare conditions as a place where they could express themselves. Little did we know just how powerful this group would become, not only for the young people who take part, but for the whole family. Human connections really are what makes the world go around and our Unique Feet are leading the way.
Since Oct 2017 we have been supported through funding from the People’s Health Trust and Health Lottery and in 2020 by Healx, local drug repurposing company for rare diseases, to build the group to 10 families. Twelve fabulous children and young people strong, we have branched out into all sorts of fun activities including horse riding, cycling, canoeing, yoga, climbing, trips to the seaside and picnics at National Trust parks. We annually go to the Panto and have family meals out allowing our children safe experiences they can share together, sometimes accompanied by extended family and siblings making for a true family affair.
We spoke with a CamRARE Trustees and Unique Feet members Sue Berry, Alison Omand-Lewis and Tracey Murray to find out more…
I got involved when Jo Balfour (CamRARE Ops Manager) contacted me, knowing my son had a rare genetic condition, with an idea to gather a group of similar children to dance at the SOBI Ball in Cambridge. My son agreed (even though he has huge coordination issues and was the only boy). We became one of the 4 original families involved. The children were all very different but really pulled together with their teachers to shine at their performance in April 2016. The children really got along and enjoyed each other’s company, as did the parents sitting chatting during rehearsals.
It’s been great to see the group grow since 2017 when we received grant support.
Both my son and I have found friendship, understanding and non-judgemental support. We have a like-minded group of families that, although all the children have different needs and strengths, understand the challenges that rare conditions can place on a family. Socialising and having others at the end of a phone allows confidence and self-esteem to be built, or we can just have a chat when it is needed. Eric has been able to try new activities and experience new challenges. Unique Feet has also allowed me to be educated and increase my knowledge about rare diseases and the complexity of how others have to deal with them.
My son is more confident and willing to try things that he would never have dreamt of doing. He is sociable within the group, in his own way, and looks forward to the meetups. He attends the Unique Feet ‘You Can Bike too’ sessions at Milton Country Park. Amazingly someone saw the photos on social media and contacted me……… after discussions they agreed to help fund a trike for Eric! We now regularly cycle as a family, something we were never able to do before which has been life-changing for us.
Now I am helping with organising, coordinating and facilitating family activities for Unique Feet both in the school holidays and during term time. These are usually fortnightly, although during rehearsals for performances it can be daily/weekly. There are also occasions when a family might need different support, for EHCP/education matters or general family support and I’m always happy to help out then too.
My daughter Eleanor was one of the first group of dancers that formed Unique Feet. The children were highly anxious at the beginning and we struggled to even get them into the room! However, by the end of the first session, a wonderful warm friendship had begun which has continued to blossom. The group is truly inclusive with everyone really having the opportunity to learn how to express themselves within their own abilities.
The big takeaway from this group, however, is the benefit to the whole family. We found the support from other parents an enormous help, especially during Eleanor’s transition to secondary school where we faced a big battle. Having other parents who had been through a similar process, guide us was invaluable.
It is wonderful to watch our young people forming friendships and supporting each other and being able to benefit from friends who see them for who they are and who don’t see the disabilities in one another.
We got involved with Unique Feet around 18 months ago after Jo contacted me for probably the 10th time. Originally, I didn’t think the group was for us, but Jo is very persuasive, and we decided to come along to take part in the performance for RAREfest18. This is when we realised what else the group was involved with and all the amazing support it has to offer. My daughter Charlotte has really enjoyed the cycling and horse riding, but it has also been a great opportunity to be involved with other families in the local area.
The benefits go much further than just enjoying the dancing and activities, having that opportunity to connect with other mums and dads and boost moral or get advice is brilliant. When you spend a lot of time battling with schools or medical professionals you can run out of energy and the group have this ability to give you the courage to keep going. It gives you time to work through things and form a plan for moving forward.
There is also great sense of humour and banter and it is important to remind each other we aren’t just mums but are also working people, wives and of all the other things we are and to have that perspective so you don’t get caught up in only your child and their condition all of the time.
It is nice to have the regular and local aspect to it. It can be important to find others that have the same conditions to understand the disease more or its progression, but in reality, these families can be widely spread meaning regular interaction isn’t easy to achieve. This group is not about that. We want to be able to meet up regularly and do things with families local to us who understand our family.
Now that our People’s Health Trust funding has come to an end, we have been organising fundraising activities and applying for new grants and we will continue to offer activities and days out for the families. As the group has a wide age range, we will be spending time this year finding out what our young people want to achieve and may split the group to allow the older members the opportunity of more independent outings (although an adult will be close by). This could be the theatre/bowling/meals out etc. We feel that this is vital in helping them develop life skills and have the chance to do so in a group they are comfortable with.
More than fun activities and friendship!
Our Unique Feet group has grown to be an impressively empowered group of children, young people and parents. Over the last few years they’ve taken up opportunities to spread the word about rare disease and champion the unmet needs of those affected. Four families have told their story on BBC Look East, three have been featured in the Cambridge Independent newspaper, one appeared on BBC Cambridge Radio at a BBC Children in Need event and others have championed the cause through talking in school assembly and running fundraisers. Mum’s are actively involved in learning and networking by attending our educational events and conferences whilst two have become trustees, one of CamRARE and the other of our spin-out organisation the Rare Disease Nurse Network. Allison now co-ordinates the Unique Feet group too. This is community involvement at its best!
Although some of our children are less mature than other teenagers, we are looking at ways that they can experience outings together with a degree of independence. They are such a lovely support for each other and help keep each other out of trouble.
I personally would like to be able to advocate for families who have a rare child, when they are in need of help with schooling/applying for an Education Health Care Plan.
Tracey Murray is a trustee and part of the Rare Disease Nurse project. an organisation founded and spun out to independence by CamRARE. As a qualified nurse Tracy brings invaluable experience to this project.
Joining the CamRARE team as a trustee in July 2019 Sue Berry brings many years of product development for a leading retail brand as her background, supporting the development of our future focus and strategy.
Alison Omand-Lewis is one of the founding members of Unique Feet, now leading the coordination of the group activities. Alison is passionate about supporting families with the challenges of education and health care plans.