Ava-Grace

Hi, my name is Ava-Grace and I am an identical twin, we are 6 years old. I was born with a rare condition called Arthrogryposis and I have the Amyoplasia type. 

Arthrogryposis Multiplex Congenita (AMC) is a term used to describe over 300 conditions that cause multiple curved joints in areas of the body at birth.  It varies from person to person with the commonality being stiff joints and muscle weakness. 

AMC is not a specific diagnosis but rather a clinical finding of permanent shortening of joints also referred to as non-progressive congenital contractures.

Occasionally AMC can also affect the central nervous system of which the survival rate can be low.

I have undergone various surgeries and treatments since I was born but after my surgeon left the hospital very unexpectedly I am now unfortunately struggling to find a surgeon who is qualified and confident enough to operate on me. I cannot walk so am restricted to a wheelchair so cannot run about with my twin. The muscles in my upper legs are fused together so hard to diferenciate the working muscles from the non working. 

My mum and dad are my carers and do everything for me. I have 7 other siblings who all live with me. My stepbrothers came to live with us 6 years ago so it's been tough for us having such a busy house with no support but we have as much fun as we can. 

We are going to be fundraising for a long time now so I can have the best future. My oldest brother is a football coach so he will be organising some football tournaments to help raise money for me and my mum and dad have lots of ideas too so I hope you can give generously and help me to have a more independent future with the equipment and therapy I need to help me grow. 

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