Story
Thanks for taking the time to visit our JustGiving page.
Five years ago, our son Max Edney, aged 12 months old, suffered two broken legs in under two months. His and our world immediately changed forever.
We found ourselves in a 'dual investigation' between Doctors and Police & Social Services. They were looking to understand why our little boy had broken both legs in a matter of weeks... we were desperate to find out why too!
After being told "your son may not come home with either of you" we found ourselves in a very different world to the one we had known.
Max was diagnosed with a rare condition called Osteogenesis Imperfecta (OI) also known as Brittle Bones. This was bitter sweet; the 'suspicion' of child abuse had now been taken away, but in its place was a life long condition which our son had to deal with.
This year, children in the UK (and across the world) who have OI will be taken into care, because there will be suspicion of child abuse. If a child is then adopted, they will still break bones, but will never be able to be 'given back' to their natural parents, even after they have been diagnosed with OI.
The fact is, OI is a rare condition, so sadly, it is 'more likely' to be abuse than OI.
We want to raise awareness so medical staff, police and other professional agencies think 'Could it be OI?' before taking children away from their parents.
We as a family have had so much support from The Brittle Bone Society, that we wanted to 'make some noise' to raise awareness of this rare condition. We also want to raise funds to help with much needed research, emotional support and physical support for the children and adults who have OI.
Max has a milder form of Brittle Bones. He has 'only' broken 15 bones in the last 5 years. Others who have a more severe form have broken over 250 bones!
Brittle bones, as the name suggest means that bones break with little or no trauma. Though fragile bones are the hallmark of OI, other medical problems, including loose joints, early hearing loss, brittle teeth, respiratory problems and 'easy bruising' are also part of the condition. Many people with this condition live their lives in wheelchairs.
Please give what you can afford as it will make a real difference to the people affected by OI.
Thank you for your support to all of us who are taking in any of the 12 events we are running over 12 months from June 2017 finishing with The 3 Peaks Challenge in June 2018 :-)
With love and thanks, from:
Steve and all of the truly awesome friends who are taking part in one, two or more of these 12 events...........and of course from all in the Brittle Bone Society family.
www.brittlebone.org