My name is Martha and I am 13 years old.
I have a rare chromosome disorder called microdeletion 16p13.11. It is so rare that only around 50 people worldwide have so far been diagnosed with the same condition.
The condition varies from person to person but for me it means I am unable to roll, crawl, stand or walk, I have very poor fine motor skills, I have a mild hearing loss so need to wear hearing aids and I have glasses for an astigmatism. I also have severe learning difficulties and need an adult to help me with everything I do. In addition to my chromosome disorder I also have developmental dysplasia of the hip. This means the bones in my hips haven't formed properly and I may need an operation in the future to put them right. I also have complex epilepsy.
Despite all my challenges I always have a big smile and enjoy listening to music and exploring books.
My Mummy and Daddy are always looking for different therapies and equipment to help me, including regular physiotherapy at home and hydrotherapy at a local therapy centre. The sessions are incredibly beneficial to me but are also very expensive so we are fundraising to enable me to continue to access these activities.
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