We often think of rare diseases in medical terms and it’s easy to lose sight of the children and families at the heart of our work. So, for the recent charity ball hosted by Sobi, the CamRARE formed a contemporary dance group – ‘Unique Feet’ – featuring children with rare diseases.
The kids rehearsed together weekly for several months, and over that time a lovely sense of community has emerged. We hope to continue this… stay tuned!
All proceeds from the ball will support us, the Haemophilia Society and Rare Diseases UK, and of course Sobi is a specialist pharmaceutical company focusing on rare diseases, so the whole night was a brilliant celebration of the rare disease community.
We received a beautiful letter of thanks from the group which we share here.
“I write this email on behalf of the children from Unique Feet and the parents. Firstly we just wanted to write and express a big thank you to all at CamRARE for allowing Jo and Ekida to develop the concept of Unique Feet and for the support and investment you have given to the project.
As you will be aware Unique Feet’s moto is “Life may not be the party we hoped for, but while we’re here we should dance” and that’s what the children were able to do on Friday with your support. As you appreciate it can be very difficult and frustrating at times raising a child with rare diseases/syndromes, purely because health care professionals are not always aware of the condition or how best to treat them, therefore its refreshing to know organisations like yourselves are working closely with key companies to improve the lives and experiences of patients with rare diseases. The SOBI event not only gave us an opportunity to raise awareness of our own child’s conditions but more importantly remind all the people who attended the event, that behind each rare disease/syndrome is a very special and unique child/individual.
Although Unique Feet is still a very new concept its been valuable for both the children and us as parents. The children have formed a very special friendship, but more importantly were welcomed in a friendly, safe and compassionate environment where they could truly be themselves. We wrote as our contribution for the national rare disease day “all children need is a little help, a little hope and people who believe in them and beautiful things can happen” Unique feet has definitely provided this and hopefully was demonstrated within their performance. For us as parents its been great to network, discuss issues with people who truly understand the daily challenges we all face, but again helped form new friendships as sometimes isolation can occur. We are all hoping this is just the beginning of this special group.
We have all thanked Jo, Ekida and Emily personally, but we would be grateful if you could again pass on our sincere gratitude to them all for their patience, enthusiasm, time, but more importantly coming up with the idea of this project, no words can truly describe what it’s really has meant to us all, to be part of this group. I suppose we should let the actual performance do the talking! We saw four very special children who face daily challenges come alight on stage with confidence and grace.”