The Rare Project is designed to raise awareness of rare conditions, whilst exploring our attitudes towards those with a disability. It is designed to challenge preconceptions and to look beyond the outward appearance.
Elisabeth was born as a twin at a gestation of 23 weeks and 4 days. She weight 1lb 4.5 ounces. Her twin sister Mara died from complications 27 days later.
After 3 months is was discovered that she had developed hydrocephalus (water on the brain) probably caused by a small brain hemorrhage. She was fitted with a vp shunt at 4 months old, and had a revision surgery at 5 months. It has not been an easy journey for us. There have been, and still are, a lot of uncertainties for us. Will she survive, will she be able to walk, to talk, to function in this world? Her situation is so unique, that even we don't know what the next day will bring. Hydrocephalus is a condition of which the effects are different for everyone. So we try, fail, try again, are patient, analyse, do research, try again, and keep trying to explain to people that even though you can't see it and you won't notice it most of the time, her brain does not work the same as most other children.
Due to her prematurity were we unsure how her development would be affected, but she has met all of her milestones, just a bit later than most other children. She could not walk until nearly 2 years old, but she is now a very active 6yo who loves running, climbing and doing crafts. She has recently started ballet lessons, something she has been wanting to do for a long time.
Elizabeth is learning how to focus and her concentration span is slowly increasing. Concentration and following instructions can be very difficult for children with hydrocephalus. She is a very happy 6 year old with an infectious laughter and a lust for life that is an inspiration to all of us.
Seeing Elisabeth growing up into this wonder of a child after so much uncertainty has made us fully appreciate every step she has taken, every word she has spoken and every smile we have seen on her face. She shows us every day that life is worth living and that great things are worth fighting for. We would not change her for the world.
The Rare Project will ultimately give you the opportunity to get to know the person behind the condition. If you have a child or are an adult with a rare condition or know someone affected then please ask them to get in touch with firstname.lastname@example.org.
If you would like more information on hydrocephalus click here http://www.shinecharity.org.uk/. if you would like more information on premature babies you can find details here http://www.bliss.org.uk/
Find out about some of the other children taking part in the Rare Project by clicking here.
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