trickg

Last night I sat down to veg and watch a little tube - something that I don't do very often - and when I was surfing through the channels, I came upon this piece done on the Discovery Health channel that was probably the most heartbreaking thing I have ever seen.

The subject was a little girl named Juliana, about two years old, who was born with the most severe case of Treacher Collins Syndrome ever encountered where the afflicted child lived.

The name of the piece is aptly titled "Born Without a Face" and at this stage, just over two years into what is going to be a lifelong stuggle, she has had about 15 surgeries to try to reconstuct and repair her face and skull so that one day she might live a "normal" life...only her life will never truly be normal. The extent of her disfigurment has seen to that.

At one point, they were showing this loving little girl, prepping for surgery, and her hair so closely resembled the sandy blonde, curly locks of my own 8 year old daughter at that stage, ( http://www.dance-x-treme.com/bad2.html ) who is beautiful, healthy, talented and smart, that I couldn't take it - I broke down and bawled like a baby. At this point, everone else in the house was asleep, and there I was, sitting on the couch, tears streaming down my face, imagining the life that this innocent little girl has faced and will face in the future.

So many questions have run through my mind about this since last night. Children who are born with Treacher Collins syndrome are otherwise normal, and have normal intelligence - at what age is this little girl going to come to the understanding that she's not like everyone else? At what age will she look into the mirror and understand that no matter how many surgeries, there will never come a point where she will enjoy the beauty that so many others are blessed with? What is God's role and purpose for this child? Has she been sent to teach those who learn of her how blessed the rest of us are?

Would it not have been a kinder fate to have allowed her to die shortly after her birth rather than to take the steps to save her life? This idea runs against what I have been taught growing up, and what I currently believe, but her future looks so painful and bleak.... Then again, she seems to be learning and loving the life she has been given - would it have been right to take that away from her and not give her that opportunity to learn and grow? I just don't know.

Has anyone else seen this? Here is a link to a recent article about her, and a further link to the family's web site. WARNING - the pictures of Juliana are not for the faint of heart.

http://wusatv9.com/news/news_article.aspx?storyid=44700

Tootsall

And here's a story that might be appropriate.

http://sfgate.com/cgi-bin/article.cg...i071500S73.DTL

Who knows what medical science might come up with next?

trickg

Toots, I know that there have been some great advances in bone regeneration too - I believe one of Juliana's last surgeries involved that and at this point they are waiting to see if it is going to be successful, or like so many other times before it, they are going to have to regroup and backtrack a bit, and readdress the issue in a different way.

I hope and pray that there is some kind of deliverance for this little girl - be it a peacefull passing from complications arising from her ailment, or breakthrough advances in medical science which might allow for bone restructuring that would give her mostly normal features.

I don't know if I could bear that kind of a burden, although this little girls parents possess a strength and a faith in God that I'm not sure I would have under the same circumstances.

There have been a couple of cases in recent years in the news where I have prayed for the deliverance of the afflicted - it was almost a relief when I heard that Christopher Reeve passed away, and the same for Terry Schiavo. As sad as it must have been at the time, the burden that has been lifted from those families (and other families in similar situations) is immense.

I'm far more blessed than I realized and probably more than I deserve.

Mr. Semman

Patrick,

The little girl most probably already knows that she is not normal. But, the love and inspiration of her family makes all the difference. I have Icthyosis Vulgarus, which is a seasonal thing, and for which there is no cure.. Every winter my skin dries all over to the point of scaling. This year it is afflicting my face (fortunately not my chops). I suffered the comments from classmates, and even my own brother and sister, but you learn to survive.Likely the girl will suffer the same ridicule from classmates and others. She too will survive. Instead of pitying her plight, be proud of her, like her parents are! Christopher Reeves used his plight to help others. His wife now is surviving cancer, but has learned from her husband how to fight and survive.

We must all be grateful for what we have. I believe that it is God's way of checks and balances. The little girl is so fortunate to have her family, which loves her and will help her to succeed. Others are not so fortunate to even have a family.

God bless.

Gary

Alex Yates

Kevin Hilman

Patrick,

I feel the same heartache you do for this young girl and her family. I'm also the father of a beautiful "normal" girl and have first-hand knowledge of how bright, innocent, loving and good small children are. It is just terrible to think that this poor girl with all of these wonderful qualities is going to suffer during her life just because of appearance.

It makes me think of Joseph (John) Merrick, better known as the "Elephant Man" who was afflicted with Proteus Syndrome in 19th century London. Because of the distortions of his head and body he was subjected to exploitation, sub-human living conditions, and beatings throughout most of 21 years. His only relief came to him late in his life when rescued from the freak shows by a compasionate doctor. This little girl is fortuanatley blessed with a family who loves her fully and supports her fully regardless of her appearance. Coincidently, as I was driving in to work this morning I also heard the story of the woman who had a face transplant in France. Hearing this gives me hope that technology might be able to help this little girl.

My belief is that this earthly life is really just a fraction of a moment when compared to our entire (eternal) existence. Life on this world is simply a test to see how we treat other people despite differences. I'm glad you brought this topic up because it is a sobering reminder of how fortunate most of us really are.

Kevin

trickg

Kevin, the thing is, with this girl, it goes far beyond appearance. She is going to need extensive surgeries just to get to the point of being able to function -
she has tubes where her nasal passages are supposed to be to keep that airway open so that it doesn't grow shut
she needs to have major modifications to her both her upper and lower jaw before she can even get to where she can eat, or speak
She has to wear hearing aids to be able to hear
She only has one good eye, and recently they had a scare that she was going to lose that one

But, they did show some footage of this girl playing on a drum, and banging away on a toy piano, and this just one day after a major reconstructive surgery on her skull.

Well, look at Helen Keller - blind and deaf, no one ever thought she would be able to amount to anything - all jokes aside, her life was an incredible example of maximizing and being thankful for what you have, and overcoming obstacles, regardless of what others might think.