A story by Brittle Bone Society
To provide Scottish children who have OI (Osteogenesis Imperfecta) to attend our Family Conference by covering the travel and accommodation costs for them and their families/carers. The event was held in Manchester in September 2015.
What Family Conference did
Our Family Weekend Conference took place from September 11-13th in the Radisson Hotel at, Manchester Airport. The registration form was available for our members from June 2015. We promoted the grants available to Scottish families with OI, through our newsletter, our website and Social media and in particular on our Scottish Support Group Facebook Group. In addition we directly emailed many Scottish families.
5 Scottish families applied for a grant to enable them to attend the event, 2 of whom had never been to a Brittle Bones Society Conference before. The amount of grant was determined by a points system taking into account whether they had attended before, how far they had to travel and any special circumstance. They all paid 25% of the total cost themselves. The weekend was attended by 153 people from all over the UK, Republic of Ireland and Europe.
As part of the weekend event alongside the main conference, we held a Cool Bones mini conference for young people aged 11-15 years who either have OI or have a sibling with OI. There was also a crèche for children aged 0-10 years. Carers were able to attend many presentations by healthcare professionals.
There was a Therapy Resource Stand manned by Occupational Therapists and two staffed wheelchair manufacturers stands. There were many opportunities for the families to network and get to know and chat to other families including the informal Pub Quiz on the Friday evening and the Gala Dinner and disco on the Saturday evening. The whole event provided an opportunity for the children with OI and their families to relax.
However we now realise the importance of education and support to families who have this condition. The conference is an ideal opportunity to meet others, learn and develop friendships to support each other for another year.” Another Scottish family who attended Conference said: “We have gained so much knowledge. It amazes me that we still have so much to learn after 12 years and it’s wonderful to get so much specialised information. We have new ideas to take back to Physio’s and OT’s, and new treatments to look into.”
By attending a Brittle Bones Society event he realized that others with OI also feel this isolation and pain which he often feels. This has had a significant effect on him dealing with his condition. He has gained confidence and inspiration from others.
Cameron in 2015 assisted in successfully promoting our Charity and our work on BBC Countryfile to help launch BBC Children in Need fundraising for 2015, he then won an acting role in a CBBC TV childrens drama ‘Eve’ and he is keen to now follow a career path in the media. Cameron has received a number of awards from our Charity at our Conference Events over the past few years picking up the BBS Awareness Raising Award 2015 at Conference and been recognized for his contribution and value and input and this has helped boost his confidence and ambition to strive to achieve the most he can from life – despite the hundreds of fractures he endures.
Cameron first met two Paralympian Champions in 2012 who remain prevalent in his life. Mum Heather said ‘Wilma is like a member of the family to us, we visit often and she attends Cameron School Events to help with prize giving and generally to support Cameron’. It’s good for Cameron to have people outside the family – who are in his corner and supporting him as adult hood lies ahead’.
Brittle Bones Society annual conference has evolved and improved over the past few years to include ‘separate’ spaces for the different age groups involved. Our professional child minders recruited each year keep the very young children safely cared for. We are currently redeveloping this to rename it ‘Kidz Zone’ in 2016, as some of the young children have told us that ‘creche’ is not appropriate – it’s too limiting and childish and it will help us reflect the mix of ages and employ suitable distractions for them.
The main conference programme covers the needs of adults including parents where they enjoy the healthcare professional talks and workshops, knowing their children are in the most suitable environment.
The programmes we have offered speak to them directly and allow them the opportunity to speak freely of their fears and challenges and the sense of others being in the same position offers a sense of community and shared problem solving. The ‘OI Can’ attitude is prevalent throughout the weekend with talks from mentors recruited from the BBS VOICE (launched 2010) age group (16-30 year olds) who can explain they also experienced problems similar to those they are currently addressing, however the mentors speak directly how they have gone on to achieve success in education, work and relationships.