I was born on 29th October 1998 and suffer from a rare condition called Osteogenesis Imperfecta - more commonly referred to as Brittle Bones.
When I was born I suffered two broken legs and had to stay in
hospital for a week.
They seem to have mended themselves okay and so far I have suffered no further complications with these fractures.
I broke my left arm around a week later after I was brought home but have not broken anything since.
My mummys' name is Tracy and she looks after me every day whilst my daddy, Darren, works as a computer programmer. I'm not as big as other babies of the same age and I don't put on as much weight as them, but the doctors say this is normal for someone with my condition and not to worry as long as I keep putting weight on.
My
first teeth have come through at just over 5 months and they
aren't as strong as the other babies teeth. They are not as white
and I have to take extra special care of them as they are brittle
like my bones. The dentist says that my permanent teeth will be
much better but I'm not to drink lots of cola or eat lots of
sweets.
In every other respect, I'm a normal, happy baby and enjoy playing and meeting new friends.
At 9 months I have learnt to sit up, which mummy and daddy think is great. I am now trying to put weight on my legs to push up and down.
I'd love to hear from anybody who wants to write to me - I know my mummy and daddy needed to talk to someone about my condition. They have come to terms with it and are coping very well, so if you have any questions or just want a chat, just press the 'email me' text below.
I've just celebrated my first birthday and am glad to say I have sustained no further fractures, apart from a couple of ribs that seem to have fractured and repaired themselves.
To bring you up to date, I spent a couple of days in hospital during the summer after a cold turned into pneumonia. My parents were unaware that OI children are more susceptible to chest infections until this time, and would stress to any parents of children with OI whos child develops any sort of cough or wheeziness to check with their doctor. We had to go back twice before I was diagnosed, so don't worry that you may seem to be over cautious - my parents were told that a baby will stop breathing if they become too tired, another piece of information they found out through experience.
On a more positive note, I've just returned from my second treatment of a biphosphonate called Pamidronate. Please try this link which will take you to a site that explains what the drug is, what trials have been performed and there is another link called Understanding the Structure of Bone in OI which can give anyone who is interested a much greater understanding of what causes the fractures and other complications linked to this condition.
Although I'm a year old, I still haven't managed to crawl yet, let alone walk, but I'm becoming more and more mobile each week. I can roll and shuffle about, and can also sit up, but given the risks associated with my condition only do so when there's someone nearby to catch me when I fall! I'm slowly starting to make coherent sounds but no actual words yet.
That's all the news I have so far, but keep those emails coming and don't be frightened to ask questions.
See Ya'!
Charlie...... x x x
Page Last Updated November 1999b Page updated August 1999
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