Saturday, August 3, 2013

Awareness Week...

I wrote this yesterday & published it, but it obviously didn't work, so try again today...


This week / day is very special for multiple reasons, 3 in fact, this first week of August is Cerebral Palsy Awareness Week (Monday July 30 - Sunday August 5), Jeans for Genes day (Friday August 3) and World Breastfeeding Week (Thursday August 1 - Wednesday August 7), all very important to me.


Every 18 hours an infant is born with, or will develop, cerebral palsy, which is roughly 600 - 700 children a year; the number 1 physical disability in children.  Cerebral palsy is not something you can catch, it is caused by damage to the brain during pregnancy, delivery, or soon after birth; the main causes being oxygen deprivation, or prematurity.  There are various forms of CP, but all affect the movement, tone, posture, coordination and reflexes of the body, and often people with CP also suffer from vision, hearing, learning and speech impairments, or epilepsy. 

Lyla's second cousin suffers from diplegia cerebral palsy (I hope that is correct), and we have been lucky enough to come in contact with other children whom also suffer from CP.  Several months ago Lyla was "diagnosed" with cerebral palsy, spastic quadriplegia actually, spastic meaning high muscle tone, movement difficulties and involuntary movements, and quadriplegia which mean it affects the entire body.  BUT, she doesn't actually have CP, confusing I know, but if you were to just look at Lyla's characteristics (movement, tone, etc, etc) cerebral palsy fits, this though, allows me to find out more in terms of therapies that may be able to help. 

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Jeans for Genes day, which is today, was a cause I never really thought much about until just recently. I, like many, used to give my gold coin donation at school just so I could wear jeans for the day and not really know why, or what I was giving money to, probably because it didn't affect me... Well turns out all these years later it has.  Every year millions of Australians give a gold coin donation in order to wear jeans for the day; these donations go straight to the Children's Medical Research Institute.  It is here scientists are able to find cures, treatments and diagnosis' for the 1 in 20 children who are born with congenital birth defects, diseases or genetic disorders.  Lyla is one of these children, as are her special playgroup friends, and my cousin Chelsea, who lost her battle to brain cancer, July 5th, 2011 at the age of 5. 

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And finally, World Breastfeeding Week!  Those who know me, know I am a huge advocate for breastfeeding, and those who know me would know that it was something we were physically unable to do and I was devastated, but that didn't stop me!  Due to Lyla's condition she was unable to suck, which is obviously crucial for breastfeeding, thus she had a feeding tube inserted.  For over 7 months I attached myself to a pump and 99.9% of her diet was breast milk.  But my days slowly turned from caring for Lyla, to trying to express enough so she would never need formula.  Determined to go for as long as possible I knew it was a battle I would not win; a child whom is solely tube fed cannot go on forever with breast milk, nor could I, so the time came and I stopped. 


Jess


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