Rare diseases are complex, chronic disorders which normally affect multiple organ systems and are often life-threatening. 75% of these affect children and this places many challenges on both the child and family as they journey through life. These can range from financial strains, feelings of isolation, physical barriers, or a lack of suitable care. When faced with such uncertainties and added difficulties, being able to access and use time outdoors can be incredibly powerful both mentally and physically, particularly if you can build it into a strong community network.
While there are many disease specific charities providing valuable virtual support networks for those affected by the same condition, geographical barriers can make physical events much more challenging and make it hard to connect with people. Cambridge Rare Disease Network (CamRARE) attempts to create networks to improve the rare disease journey, forming a powerful regional voice to ensure their collective needs are met as well as providing direct support to families living with rare disease in Cambridgeshire.
Jo Balfour is a founding member and Managing Director at CamRARE, who also founded the Unique Feet group. She got in touch with the Alpkit Foundation after support as they transitioned out of the long series of lockdowns. It was an incredibly important time in being able to get people back together who had been shielding for so long, looking to get the children enjoying the outdoors again and the benefits taking part in these activities brings.
“Our Unique Feet group are a wonderful wonderful mix of children aged 2-19 living with different rare diseases and facing challenges including those affecting physical, sensory, neurological and mental health. Some are wheelchair users, some are non verbal and whilst these things can be barrier to accessing activities, they’re determined to give things a go. It’s daunting and lonely living with something others don’t understand, where only 5% of the 8000 different rare conditions have a treatment, but together through UniqueFeetCam they have found their tribe, they’re resilient and give each other strength.”
Looking for support to provide free, accessible, inclusive activities for their group, the Alpkit Foundation was delighted to provide an award of £500. This allowed them to offer assisted horse-riding, nature-based and forest school activities. To get the children back into nature in a safe and responsible way appropriate for those who are extremely medically vulnerable and have been shielding for the best part of a year.
Formed initially as a small group of 4 children meeting regularly for dance practice, Unique Feet soon flourished and now offers a fun range of inclusive outdoor activities from cycling to climbing. It’s a welcoming space to meet for physical and mental wellbeing and friendship building and clearly demonstrates the strength in creating strong bonds across a scattered and isolated community. It has a real impact on the children making long lasting friendships, having that opportunity to be themselves knowing there is support around, whilst also offering important support for the parents and families too.
“There are 20 families involved with Unique Feet. 63 beneficiaries. 20 wonderful children who have a diagnosis of a rare disease or are as yet undiagnosed. We include siblings, who are often young carers, in the activities. Parents also benefit and have their own support network within the group.
These children all have a different rare condition and have different levels of physical and learning disability. Some are non-verbal, others have sensory impairments, several are wheelchair users and some have life limiting conditions. Most are affected in relation to learning and social and experience some medically induced anxiety and trauma which impacts mental health.”It was wonderful to hear back from Jo and to see how getting outdoors is having such a positive impact on their lives.“Over the last year we’ve spent time exploring local parks and gardens, we’ve been horse riding, cycling, climbing, swimming and more. This summer we’re headed to an outdoor activity centre and trying skiing and sledging for the first time!! The sky’s the limit and we work with brilliant providers who ‘get’ and do accessibility well so all our kids can join in”
Now that sounds pretty amazing. Look here for more about the incredible work of the Cambridge Rare Disease Network.