My schedule for the rest of the busy busy week :)

Need to do something productive with my free time.

so i made up a self note board. :)

Yesterday i watched a documentary on arts channel.

They featured these 2 children born with skin disease. They are called the butterfly children.

Their parents have perfect skin but their child suffered reddish-skinless bodies.

pain is e only constant in their life.

Every morning this 16 yr old girl have to wake up at 2am just to fix her wounds.

The nurses had to put artificial tissues on her skin-less back for four agonising hrs. Just in time for her to get to sch at 6 after that.This procedure was to disallow infection and widening of the wound.Her whole back and neck looks like e red taiwan sausage, to put in crudely. She had to travel in wheel chair sometimes because the pain sapped a lot of her energy. The docs don't know how long more can she live.

Her 18 yr old bro's case wasn't half as bad. He had skin problems at diff area of his body.but small patches of it.

This disease may also affect them internally as well. Once the boy had internal blister on his throat and kept coughing out blood. Internal injuries could be fatal for them. My throat was super painful while watching the show, so i could relate to him. But my pain was maybe only 10 percent of what he is going through?

Every movement they take may be fatal. They cannot not play like normal children.

Butterfly children usually live up til max 30 years old.

While i was watching the show my heart really ached for them.

One small blister on our leg already caused us to squeal in pain. imagine a big patch of blister on your whole back. Bathing is a difficulty for them too. If they fall accidentally, their skin could tear and form open wounds that wont heal. I guess only when we open our eyes to such tragedies do we realise how blessed we are.

How normal we are and how comfortable our lives are.

Thank you God for our hands,our feet,our body and for making us whole.