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medical mystery unknown sydrome

medical mystery unknown sydrome

Rhien was born with an unknown syndrome, there is no baby reported to-date in the world(as far as doctors are concerned) that has the pattening of problems that our little miracle has,due to this here future is very uncertain,almost every fortnight since birth,doctors have found something els to add to her list of problems.......water on the brain,malformations of the brain,brain damage,eyesight a...nd hearing loss/difficulties,born without normally formed ears,spina bifida,head shoulders neck and spine are fused,shoulder girdle malformation,curvature of the spine,extra boney tissue on her ribs and knee,left arm does not extend,left hand does not open,hip displasia,knee malformation,spinal cord damage,muscle disease,absence of uterus/womb,talipeze,extra digit on foot,severe developmental delay,numerous behavioral problems........Rhien is now almost 2 years old,she cannot crawl,stand or walk and will almost certainly be a wheelchair user,she has now mastered the sitting :) hooray!!! but due to the way her brain works she forgets she can do it,so we have to remind her then shes fine again,its a new thing almost every day!!!lol She is the joy of our lives,the happiests little thing ever,always has a smile on her face,plays tricks on mummy and daddy,mimics and is also sometimes very sneeky!!!! her favorite thing in the world is waybuloos!!best word is whooszat?!!and especially loves music,dancing and cheese!every day is a struggle for her with every movement being hard work,we get our strength from her but sometimes she needs a little back.....NHS and doctors in the UK know nothing about the cause/outlook/treatment/cure or future for Rhien,and so are very unwilling to do anything for her,she is accumulating various other disabilities due to her not receiving any treatment and this simply isnt good enough,we do not know if this syndrome "type" will effect her life expectancy like so many other syndromes, but we will not stand around waiting,we would like to take her to America,as medicine is far more advanced and the attitude is so much more positive towards SWANS (syndrome without a name)any help no matter how small is greatly appreciated,it really does make all the difference to Rhien and her family,Thankyou so much for your time and any help in the futureKind regards,Mark(father)dina(mother) and Rhien(aka:pickle face!)

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