Juliana and god

On Sunday evening I was watching TV Guide Channel. Looking for something interesting I came across the title "Born Without a Face" on The Learning Channel.
"Wow," I said. "That certainly sounds interesting."
I had no idea what this program would do to me.
The picture you see is of little Juliana Wetmore. She was born with a rare disease called Treacher Collins. This rare genetic disorder (she has had countless surgeries to correct her deformities and will have many more well into adulthood) is characterized by various malformations of specialized structures in the head and neck, including notched eyelid fissures, hypoplasia of the mandible, enlarged mouth with high or cleft palate and incorrectly positioned teeth, and atypical hair growth. (Note that this syndrome does not affect the brain. Aside from her face, she is a normal little girl.) Doctors seem to agree that Juliana's case is the most extreme in recorded history.
Within the first 5 minutes of the program I knew I had to call mom and tell her to watch.
"Geez, it makes you wonder why god would let that happen," she said.
Not wanting to get into a religious debate, I replied, "Yeah, I know."
But her comment made me think.
I am an atheist so I don't believe in god but for those that do I have a question. How could god justify bringing such a deformed looking child into this world? Isn't god smart enough to know that it isn't what's on the inside that matters, but what's on the outside?
There should be 0% bullshit on this topic.
Ugly waitresses are never tipped as well as the pretty ones.
Little kids point, stare, laugh at "funny" looking people.
People with deformities attract stares, unwanted attention. The ridicule hurts. I speak from personal experience.
I hate the fact that I'm interested in this girl's life. I hate my internal reaction when I see her face. I hate the pity that drips from my bleeding heart because...
In a perfect world, this little girl would attract no more attention than a normal looking child. In a perfect world, the things inside of us would mean more than the things that compose our exterior. In a perfect world, we would all be children (forever) with the world for our playground. In a perfect world, love would always be at hand. In a perfect world...
I feel for this little girl. I feel for her parents. Who wouldn't? How can she ever have a "normal" social life? The ethical questions are numerous (and unfortunately, way too important).

.....In a story like this it's easy to forget that at the center of it all is a little girl. A girl oblivious to society's bitter, rusty blade. A girl oblivious to the "truths" we adults have built for ourselves.
A girl.
Just a little girl.

mc

Links:
The family's update page
Local news story
Treacher Collins Syndrome info page