Faces of PKS
Hi there im rachael and we live im cleethorpes in the uk I have a beautiful boy called liam he is 5 years old I was so excited when I found out I was pregnant and could not waite to see my babys face liam came into this life at 34 weeks gestation weighing 5 lb 2 oz and thats when our pks journey started 25.09.09 he was born not breathing and was taken straight away to the icu unit I was finally allowed to see him the next morning all that night I lay waiting to hear any news or to even see his face but boy was the waite worth it I can remember that moring like it was yesterday his tiny little body and his gourges dark hair he was so perfect to me he had tubes and things to help him breath and a light to help his skin I stroked the glass of the incubator and longd to hold my boy the love I felt for him was unreal.
Then a tap on my shoulder it was a doctor and he took us in to a room and sat us down im sorry but your child is very ill and may not make it was how the conversation started he has a very rare and complexd heart condition and a small air way ect ect he needs takin to a special hosptial so off we went 9 months we spent in leeds hosptial while they did test after test operation after operation he had a tracheostomy fittin attached to a portable ventilator a peg for food ops on his feet for club foot a nissions fundalpcation for his reflux open heart surgery mri's on his brain chest the list goes on but the one test that I will remember is the genetic testing for endless syndromes untill it came bk pks.
I was so scared of the things I have read about it and I got quite down about it but do u no what having liam in my life has taught me so much he loves life and grabes it with both hands and tht smile god that smile pushes me to go on he loves his bells playin with sensory lights and gives me a reason to get up each day we have our bad days but they are all worth it when u see liams smile 2 years in total we spent in hospital from the day he was born. We're given this life once and by god liam takes advantage of that. Here he is my one and only pks warrior liam mark finely nalder, light of my life
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