A story by Brittle Bone Society
We provided individuals who are affected by Osteogenesis Imperfecta living in Scotland the opportunity to attend our Family Conference, by covering the travel and accommodation costs for them and their families/carers. The event was held in Reading in August 2016.
What Family Weekend did
Our Family Weekend Conference took place from August 12th to 14th at the Hilton Hotel in Reading. The registration form was available for our members from May 2016. We promoted the grants available to Scottish families with Osteogenesis Imperfecta, 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. 3 Scottish families applied for a grant to enable them to attend the event. 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 and Republic of Ireland.
As part of the weekend event, alongside the main conference, we held a Cool Bones mini conference for young people aged 11-15 who either have Osteogenesis Imperfecta or have a sibling with Osteogenesis Imperfecta . 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, Awards Ceremony and disco on the Saturday evening. The whole event provided an opportunity for families to relax.
He had a difficult year health wise. Attending conference is important to him as he really enjoys spending time with others who understand his issues and it helps him to realise that he is not alone in dealing with his condition. He has recently turned 17 and I feel that it is particularly important for him to spend time with other young people like himself at this time of transition.
The Conference allows him to do this in a fun and supportive environment. As a parent, I am always amazed at the amount of new knowledge I gain at conference and it is lovely to spend time with other families who understand what it’s like to live with this condition.”
The conference is a highlight for my daughter as it gives her a place to meet up and see others like herself. She struggles a lot with having an illness that nobody around her has.
When I say we are going to Conference she always says it gives her something to look forward to and have people to talk to who understand the things she’s dealing with. It’s also a time when she can actually be her own person without having someone constantly watching over her to keep her safe. As a parent and carer this gives me time to relax too.
Doctors told my mum and dad just the night before I was born that I was diagnosed with Osteogenesis Imperfecta. I was born with several broken limbs and fractured rib cages. The doctors told my parents that I wouldn't last a day because my condition was that severe, however they were wrong I'm still here and I will be for a long time.
Unfortunately for me I have never been able to learn how to walk because my legs are too weak and I also have a curved spine (Scoliosis). At the age of three I have been driving a electric wheelchair which is probably like walking except using wheels to get around places and doing every day tasks. I have broken and fractured so many times over the years I've lost count, it shows you how delicate I am. Having this condition I have been very fortunate over the years by not getting much surgery on my bones or anywhere else in the body.
Being in a wheelchair isn't that difficult really it doesn't stop me from doing much it gives me a lot of independence and opportunities such as, going out to see the world by visiting different countries, going out with friends and family, cooking the dinner, dancing on the dance floor, playing the ukulele and playing power wheelchair football which I am enjoying at the moment.
Out of the whole family I am the only one the that has Osteogenesis Imperfecta, and I feel honoured to be the first one in the family to have the condition. My parents brought me up the same way as my two older brothers. They didn't wrap me up in cotton wool all the time because I have brittle bones and using a wheelchair they were and still are encouraging parents always willing to let me try different things.
The Brittle Bone Society have been supporting us since I was born they have helped to raise funds for great quality wheelchairs and giving us medical support. If it wasn't for the society and being able to attend their events, meeting others living with Osteogenesis Imperfecta our lives would be completely different.