Real Mettle

I saw a video on youtube a week or so ago that made me think of what real strength of spirit and a real hero is. The video was a documentary of a family whose children, 4 girls, are suffering from a rare genetic disease called Harlequin Ichthyosis. It's a disease that causes the skin to grow in a day what it normally would in 2 weeks. It causes severe deformation of the infant and babies suffering from it generally don't survive. It is a painful and incurable disease. It is caused by both parents having the gene dormant in them, as they are not suffering from the disease themselves. The likely hood of being born with it is one in a million. These girls did survive infancy,and Laura,Hana,Dana, and Lucy Betts, were 4,10,11, and 14 years old when this documentary on their lives was made. The youtube video I saw was a segment from that.
What really touched me and got me thinking about this is a scene were the girls are having medical photos taken of their face and bodies, which are similar to a burn victim's, for medical research. The 14 year old, Lucy Betts, seemed to be coming to grips with the disease, but still suffering. As a child she said she thought all children had skin like hers and as she grew up her skin would become normal, like her parents. I imagine Laura the 4 year old is having a similar experience. Dana seems mature and well adjusted. Then it's Hana's turn for pictures of her face, "can I smile?" she asks, "of course you can." the photographer answers. Hana, all through out the shoot is smiling a huge smile in all the group pictures with her sisters and can't seem to help smiling at the camera crew capturing the scene for the documentary.
When I heard that little girl ask permission to smile, while having medical pictures taken for a frighting, painful, and permanent disease, I had never felt more admiration for anyone in my life. That's a hero, that's real mettle. When seeing a spirit like Hana's, it should make you re-evaluate your hero's being junkie rock stars and arrogant, childish athletes. The strength of spirit to face a battle
like this with nothing but a smile on your face deserves the respect of any warrior. And if you shed a tear for these girls make sure it's out of admiration and not out of pity.