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Leah Ozdemli avatar
Leah Ozdemli

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I am running the London 2019 marathon for Corpal - Supporting those with Agenesis of the Corpus Callosum and Aicardi Syndrome because this is a charity close to my heart.

128 %
£1,280.00
raised of £1,000 target
by 41 supporters
Donate

Corpal - Supporting those with Agenesis of the Corpus Callosum and Aicardi Syndrome

Corpal supports those affected by Agenesis of the Corpus Callosum which means that the major pathway across the two hempisheres of the brain is damaged or missing. Corpal is a Not for Profit group and is run by parents, and carers of children and Adults with ACC or Aicardi Syndrome.

Charity Registration No. 1086019

Story

Lilah’s story

Going for the 20 week scan of your pregnancy is meant to be one of the highlights of being pregnant. The excitement of finding out whether you’re having a 💗 or 💙. However with Lilah this excitement was overshadowed for us.

During the ultrasound a consultant was called in and I just knew something wasn’t right. From then on everything is a bit of a blur. You don’t ever picture yourself sitting in one of those quiet rooms, that to be honest I didn’t even realise existed, until you’re being shown to one and sat down with a box of tissues placed conveniently in front of you.

We were told that it looked like Lilah had something called Agenisis of the corpus callosum, which means that the part of your brain that connects the left and right sides together, allowing for communication between both hemispheres had not formed. The shock when you are told that your unborn child has part of their brain missing is unimaginable. 

So the question was where do we go from here? After numerous tests, an MRI scan, meetings with consultants and genetics specialists, the truth is we really didn’t know. We were asked multiple times if we were committed to our baby. A baby who could possibly have severe learning difficulties, a baby who may never learn to do the things we take for granted or a baby who could potentially defy all odds and not be affected. 

Through all of this we knew one thing, we were committed to this pregnancy. Fast forward to now and we now have a happy healthy 1 year old running about who made our family complete! Who knows what the future may hold, and whether it will always be plain sailing but for now we take each day as it comes and celebrate her achievements so far.

So this is why I have decided to raise money for Corpal. As this condition is so rare there are so many people, including health professionals who have no idea what it is or what it entails. They work hard to raise awareness of the condition and to support people like me whilst we deal with the unknowns from pregnancy throughout childhood. So please dig deep and thank you for reading if you got this far! 




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