Alicia's Story

It was on the 24th of August 2013 that VEDS finally became Alicia's reality. We had received the clinical diagnosis a few months earlier and then the devastating phone call to confirm the genetic results. It had been a very tough time for our whole family coming to terms with the news, but now it was time for Alicia to hear about it too. She had already shown her strength and resilience coping with me being in and out of hospital throughout her life, so we knew she would cope well with the news.


We wanted her to be told in the gentlest way possible and with what better way than with a teddy bear. It was an emotional family moment, Alicia's Daddy and I sat with her on her bed and explained that she and I were a little different from other people. Where other people had a 'special glue' inside holding them together, we didn't have quite enough and because of this we would have to be very grown up to take extra care with our bodies.


"We will fight this together one day at a time


We told Alicia about what would have to change and that for everything she couldn't do we would make sure that we found something she could do. Alicia was amazing and very proud to be different although a little sad about not being able to ride rollercoasters!


Alicia's journey has begun but she will not be alone, we will fight this together one day at a time. Our next step will be to meet with her teachers at school, do you think they will need a teddy bear??

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