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Our second child Evie was born in February 2017, after being told that there could be a few complications with her physicality when I was 37 weeks pregnant we were absolutely delighted to find that she was a normal healthy baby. We had two weeks of cuddles and passing her around to friends and family. Then her arm went limp after just picking her up. We went straight to A&E, where the Doctor carried out a routine hip check which resulted in her having a broken femur. We then spent two weeks in hospital where Evie was in traction to fix the fracture. Within that time specialists and consultants were working hard to
understand why this break happened so easily. Within the coming weeks, Evie was diagnosed with a rare condition called Osteogenesis Imperfecta (OI) also known as Brittle Bones.
We were lucky to get this diagnosis quickly as many families which we have spoken to have found themselves under investigation for fractures they cannot explain.
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.
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.
As well as raising awareness, we also want to raise funds for the Bristol Royal Children's Hospital Osteogenesis Imperfecta team. In the UK there are three OI specialists’ centres (Bristol, Sheffield and Great Ormond Street). We are lucky enough to have one on our doorstep. We can honestly not put into words how much this amazing team has done for us. At the start Evie was having a fracture a week, it can be very scary and isolating. They were there every step of the way. We were lucky enough to receive weekly hydrotherapy and physio and have specialist equipment and training in order to handle her. We struggled to give Evie a cuddle as the risk of us breaking her was too high, after 5 months of holding her on a pillow and training from the team we actually did it! After a year we now have a happy, cheeky and determined little girl, the Bristol OI team have played a huge part in this.
We are very lucky to be given this support and want to give something back. We want to raise funds to support more families, to help with much-needed research, emotional support and physical support for children who have OI.
So Matt and I and our wonderful friend Stacey will be running the half marathon in September. We would be so grateful if you could donate to this amazing charity.
Thank you so much for taking the time to read this.
I am raising awareness of Osteogenesis Imperfecta for Above & Beyond because Children's Hospital team to helped us so much
We raise funds for Bristol's hospitals to make a real difference to patient care
Charity Registration No. 1170973