Ohhhh so sad, and she was so smart!! May she rest in peace and may her family find comfort as they prepare to let her go. This is so heartbreaking!!

That's terrible...I saw the show and she was an inspiration...R.I.P.

I agree--Shiloh had a tremendous strength for someone her age and with her condition. Rest in peace, angel.

I wish her parents peace--it's not easy to bury a child, no matter how old.

She will be missed by her community. Heart felt sorrow to her parents, they lost a true gem.

Such a bright, shining light.....such a sad loss.

Shiloh, is Hebrew for "peaceful". She is truly at peace and running(for the first time) in heaven. I have absolutely no doubt.

I fell in love with her beautiful contagious smile!! I watched her on TLC and she had such loving parents.

She was an inspiration for other children with chronic diseases.

God bless her family and friends with comfort.

I'm glad I got to see her on TV. What a wonderful little person!

May God bless and keep her, and send peace to her family. If they should read this post, please know that God promises to make the broken whole again. I'm positive that her Sprite is running, jumping and playing at this very moment while she whiles away the days waiting to be reunited with you.

I saw her on TV, she always kept a positive outlook on life despite her condition. It's so sad that she passed away.

So very sad and another disease I didn't know about that affects a few children.

Bless us who have strong, healthy children. Never take our precious children's health for granted. We as parents, don't know how lucky we are.

May she rest in peace. Am sure there was no peace dealing with this unusual disease. She seems to have a lot of loving support during this difficult time.

It's not a disease, it's a birth defect, like conjoined twins.

Aww, I am so, so sorry to hear of Shiloh's passing. She was a bright and shining light and no one who ever met her will ever forget her.

Rest in peace honey.

I didn't know that the mermaid girl lived in my home state. My blesssings to her family. May she swim forever in the hearts of all who loved her.

Always count your blessings, may she rest in peace and my condolences to her family.

I saw her show on TLC. I was VERY impressed with this lil girl. She made a comment of, "Well, that's what today will be, it'll be okay." And that stuck with me. At 10 yrs old to be wise beyond her yrs, AMAZING. She was a blessing to her family, community, doctors and other children living with this and other syndromes.

Rest in peace lil one, you touched many lives.

My thoughts and prayers to the family. I also watched a special about her and recently saw a follow-up that ended with her 10th birthday party. She was  such a sweet, sweet and funny little girl.

I was so hoping they might actually put a weekly tv show about her on, because she was such a likeable sweet kid and her parents seemed like really decent, loving people.

i saw two shows about her. in one she learned to swim and in the second one she went away to camp and her parents separated. what i remember most is that Shiloh was such a comforting child! her mum was so worried about the divorce since she could not carry Shiloh from the second floor apartment and she was crying as she said maybe it would be best if she stayed with her dad. Shiloh told her it would be ok. she always had some words of inspiration for others.

I think Shiloh was not only a mermaid girl but a living angel too. in God's hands now sweet child.

Wow. . .I have an 11 yr old and 7 yr old in great health. . . .I think I need to be a little more thankful in life and a little less self centered. A story like this and a wonderful/brave little girl AND FAMILY make the things I get so irritated with in life seem so petty and trivial. Thank you to Shiloh (which means place of peace) and her family for sharing her life and her inspiration. May you find a little comfort that her life touched the heart of "an old crusty guy" and inspired me to be a little more loving and caring!

I seen this amazing just amazing little girl Shiloh on TV and WOW! To the family I am very sorry for your loss. Even though I never meet her my heart is very sad that she is not with us any longer. Peace be with her and the family.

Yes, this is the same little girl. I like that she was so smart and sometimes I had to chuckle at her because she would often tell the Doctors what to do and how to handle her health issues!

This is just so sad! Peace to the entire family.

It's his parents who put him up for such hoax. I feel sorry for this little boy. They shoudl placed all 3 brothers under foster care.

May Shiloh rest in peace!

Heather, Shiloh's case is no where near the same as Falcon's. And, how could you blame Falcon; who is a minor child, for his parent's selfish greedy schemes?? I think that was just going a bit over the edge to send Falcon a message like that, why not send one to his greedy parents instead?

All in all, why not just stick to the subject of the article and the message board which is SHILOH.

I saw her first story twice on TLC and the follow up which was on just a few weeks ago. I also saw her on The Oprah Show.

Shiloh was such a sweet girl and so wise beyond her years. She seemed to know she wouldn't live long and wanted to do EVERYTHING RIGHT NOW!!

I felt so bad for her when her parents told her they had decided to split up. And sorrow for them too. The 3 of them all loved each other so much. Shiloh told her parents: "just because you guys are splitting up don't mean we don't love each other".

I know her parents will be totally lost without her. God bless them all!

She did have a great smile!!!!

Next time you have an insurance premium increase, or your taxes increase, don't ever ask why.

what are you talking about jd? How can you talk about insurance premiums from a story about a little girl dying?

Meghan, if you get sick, should we just let you die so insurance premiums won't go up? Why have insurance or even medical care in the first place? This little girl's life was worth just as much as yours. Remember the Nazis were the ones who believed in exterminating the sick.

what are you guys talking about? I just said RIP Shiloh and you guys start talking about insurance crap. This thread should just be about Shiloh's life and nothing else. Don't talk about insurance premiums when it's an article about a little girl's life.

I think OomYaaqub was answering the wrong person.

Shiloh was an extraordinary girl and a real trooper! She and her family made the very best out of the situation and I'm sure Shiloh knew she was well loved by the people around her. RIP Shiloh!

Ham: Yes...it is rather tasteless to ask....why don't you google that info instead of asking on this thread?

Since they dicsussed this on her TV special I fell it is not disrespectful to answer this. She wore an ostomy bag on her side to collect all waste, they are not fun because they can be difficult to change, and hers neede to be changed 5-8 times per day according to her parents. Any person without a colon or the ability to urinate wears a colostomy or ostomy bag, they are easily concealed, and many, many people wear them without anyone ever noticing.

What a shame that your so mean.................Hope you never endure any kind of illness as you will be the biggest complainer and "why me".

Shiloh, thank you for being the wise little girl that you were and rest in peace with the rest of the Angels. Your parents will be ok because it's certain their faith will carry them thru this time.

Ham,

No, it is not tasteless, it is basic curiosity and that is ok. if we don't ask questions, we remain ignorant. it would appear that some on here wish to remain ignorant. it would also appear that they don't know the answer to your question because they were to embarrassed to ask. good for you for not being scared.

let's be honest here, some of you are being so mean and nasty about Ham asking his question. what i find interesting is that everyone on here is wondering how this child lived, how she got through every part of her day. if you didn't want to know and weren't curious - you would never watch the t.v. special on TLC that each of you seemed to have watched. if you didnt want to know and didnt have your own questions, WHY watch an entire hour about her?????

Thank you, Malea for knowing and having the guts to answer.

May the Goddess Bless you,Ham, and this sweet amazing child that lost the fight.

How exactly was that mean? I was thinking the same thing myself. I saw part of her show on tv, but must have missed that part. I'm glad someone above filled us in on it. And it's "you're" as in you are, not "your" as in your question was mean.

She had a catheter...

I will be called insensitive, BUT, I saw this special on TLC as well. EXTRAORDINARY measures were taken to keep this child alive a birth, and to what purpose? She was a very smart little girl, but with all of her medical problems(some of them quite painful) I wonder what kind of quality her life had? She really was not a miracle...she was a science experiment, and I think she really suffered with some of her medical procedures.

The fact that you have to ask "to what purpose" was this child alive with extraordinary measures, after what you've read about her and how much she loved life and was loved in return, indicates how morally bankrupt you are. How sad.

DJ & Xim,

It would be very hard to read your words, if I didn't know, without a doubt, that you will regret those words one day.

Dear Ham White..to answer your question of "how did she urinate", I will hazard a guess and say that she had some type of ostomy, either illeo conduit, colostomy or both. I don't know this for sure but I am a paraplegic who's lower organs don't work either and I have an ostomy for elimination purposes. Pls answer a question for me, if possible and will all due respect to you and the memory of this lovely little girl and her family..I have been paralyzed for 42yrs and I am often asked by strangers such questions as this and even if I'm able to have "relations". I wonder why this is a 1st question someone would ask a stranger rather than getting to know them first and finding out what's really important to them. Again, I mean no disrespect and as far as I am concerned, I am an open person about my disability but I just wonder why this is the first thing to cross people's minds rather than wondering first who a disabled person really is on the inside. We aren't really different from others, some of us are good and some of us are not. We love, hate, fear, have courage, and laugh and cry and bleed..etc just as we all do. Again, I don't mind the question, but just wondering "why the question first hand above all". I always wondered. If you feel comfortable, pls feel free to respond. Thanks and have a blessed day.

My guess would be ignorance and/or lack of manners. Those are very personal questions. And....people can just be cruel.

It sounds like you have a great attitude Lori and can endure idiots.

Both of my sons have disabilities but you wouldn't know it by looking at them. That has been hard for both them and me. If you look normal than you should act normal. Kids call my sons "retards" are yet they are brighter than most.

I hope stories like this and yours spread and enlighten others.

Thanks for your post Lori!

Skoodlebugmomof3 - I'm curious how you feel you're able to be a worthy judge of her quality of life and what the appropriate measures were to keep her alive. Clearly you're a mom. At what point would you be willing to say "I know it's possible to keep you alive, but we're just not going to do it anymore"? What "purpose" do you have for your children now?

She had a tremendous relationship with her parents and from their standpoint she was a happy girl despite facing many challenges.  She is an inspiration because she showed everyone that no matter how hard or painful your life is, you CHOOSE to be happy.

I work with brain injury and spinal cord patients. On the outside, you could easily think their quality of life is nil because they can't do "normal" everyday things without assisstance. Their quality of life is more related to their attitude and not their physical ability. Their families believe it was worth every life saving measure.

She was a very aware 10 year old who made a lot of her own decisions. For her it was worth it to stay alive. The footage from her 10th birthday party in the pool with family and friends made that obvious. You're opposed to calling her a miracle and instead refer to her as a "science experiment". The true miracle is that she was able to enjoy life, build meaningful relationships and remain positive despite all of her hardships, including people that would have made her life more challenging, such as yourself.

I believe in some of the points of skoodlebug; but this should be prefaced by stating that this is very complicated, and there isn't a great answer.... each case is different, and many need to be judged by individual merit; and that's not always easy or accurate.

Some would go to the ends of the earth to try and keep a loved one with them, at times becoming oblivious to the reality of the situation and at the expense of the best interest of the person in question. This isn't to say that they're cold, callous, or soley financially focused, but that in several cases these are valid questions and concerns. And, it would be naive to say there aren't cases where science does want to learn, try (not negative but not always in the best interest of the individual), and in some instances, docs or scientists see celebrity and fame in their futures if they do what is near impossible, or is currently impossible.

By searching the net, many can find what are considered medical miracles, extreme medical conditions, rarest of the afore mentioned... and have a valid point in questioning, "should these people be put through this, who's aware, who is really doing what's best for whom?"

None should brush emotions aside, but at what point is the line drawn and when does fear of loss or grief override the truth of the circumstances? And no one wants to say it, but there are cases when all is considered, then yes.. money has to be considered, especially when so many are in need.

In ethics, much of this hasn't been answered, except to say that a line does exist, rights of the individual can be violated simply by keeping them alive at all costs, and... I know many won't like this... religion has nothing to do with it. To say God did or didn't intend this, that, or the other thing is really a cop out; it doesn't have a place in these discussions. That is personal, and a belief of an individual... it's intentions may be good, it may convey a positive message or ease the situation, but remains belief, not fact or reason for action or lack thereof.

Sympathy, empathy, feeling can still be conveyed when objectively asking the hard questions, debating the individual case, the "line". And, sometimes, those closest aren't always the best to answer.

It is asking and answering questions like Ham's that will make the life of a child, born with similar condition in the future, better. What I would want to know is, what could have caused this condition?

I noticed so much about that Father also. He was actively engaged, there, involved, and loving!

If you want to know more about Shiloh, I saw a commercial yesterday on TLC that sometime in November, TLC will revisit all the people we've seen on their shows and give us an update on where they are and how they are doing now.

The commercial showed Shiloh, and my favorite, Kennadie, the primordial dwarf that we saw a few years ago, with an update last month.

The show in November should be very interesting to those of us who watch TLC and wonder what has become of all these people (NOT J&K, etc.), but the people who are living with disabilities, etc.

Blessings to you in every way!

So you are saying you would let the doctor put your child out of your misery? Just because "we can't afford the Shilohs of the world"!!!! Give me a break! I would love this child with all my heart, no matter what!!!

What the hell is wrong with people like you to say such a thing?! And you blame it on the economy?? Give us a break here! There has been worst economic disasters in past generations compared to this era's, but for you to suggest putting her out of her misery is just vile!!! You better hope that you never have kids who encounter the same as Shiloh, and if you do, I can bet you would NOT decide to put them out of their misery!!! Shiloh was much loved and that is all that matters!!!

Yeah, no one want to hear this allright - no one wants to hear idiotic statements such as yours ROD!!!

Thank you KayCee, I thought no one else noticed Rod's remarks!!

Such an idiot!!!!!!!!!!!!

Rod779083...I agree with you. This child survived due to incredible medical intervention...nobody would have had to "put her out of her misery", and she would have passed a peaceful death. No...we cannot affort million dollar babies.

Rod, it really is not just up to the physician. The Physician (s), are key to informing the parent/parents what a problem seems to be. Is is genetic? Can any kind of intra-uterine surgery be done before birth to correct a fixable problem? Does surgery need to be done shortly after birth? What will be the likely outcome? What will quality of life be, more than likely? What kind of care will be mandated and where? The parents/parent must be given all information so that informed consent can be made by the parents. The doctor can NOT make all decisions!

Some people could/would never be able to make a decision to voluntarily terminate a pregnancy no matter hoe severe the anomoly, the severity, the amount of suffering for the child, the amount of care involved or cost. It truly violates their beliefs and morals.

Other persons would consider it immoral and unconscionable to inflict a level of suffering, the most intrusive of treatments, and a life of pain with perhaps the most severe limitations. The decision to continue the pregnancy would be as immoral and wrong to them as terminating the pregnancy is to the other side.

Also, once treatment is begun, it is not so easy to stop. This is not just a "doctor" decision.

I am not advising anyone to make a particular decision by any means. This has to be made by those involved with the individual hard decisions.

Will the level of care needed have to be given in a hospital or some institution? This is just one of the huge decisions. What support systems are available? Who will provide the care-pay for all the care provided? In institutional care, are the workers carefully screened on an abuse register? Some are NOT to work with vulnerable patients of any age who are on this register? What is the level of staffing and record of providing safe care.

Are there other children in he family? Who is available to care for those children? What will be the impact on these children? What monitary assistance will be available for a parent to quit work to care for the sick child? Who will provide 11-7 Nursing Care in the home so that some sleep will be possible. Will there be the need for a ventilator with back up power always available. Can the parent/parents be taught to do tube feedings or gastric feedings. Is there a Hickman catheter? What about handling IV equipment and tubing in the home?

How will transportation be provided for Doctor appointments and equipment absolutely necessary.

Also, in catastrophic illness in any family, there is about a 95% divorce rate.

I have as many questions as you-with perhaps fewer answers.

For every $1.00 we spend in pre and post-natal care before the age of 3 years, we save $7.00. Slovenia is ahead of us, the USA with the best health care but most inaccessible care-in any industrialized country. South Africa and the USA have no form of health care for all. How much prevention of disease, disorders, and death could we avoid by preventive and maintenance care? Billions could be saved in money spent on health care at the right time.

We have nearly 50 million people with no health insurance, under insured, or inelegible for insurance due to a pre-exixting condition.

Rod, I tried to add a comment. I am not sure it posted. I wish I could get rid of this big print.

You do raise a question related to health care, but it is not the only question. I am not upset with you, I just hope you can see more than just money. You do make a real point, and when our governor cut hundreds of thousands of Medicaid recipients, many of whom were desperately ill, so many died from lack of medicine and care.

It was about NOT jsut a Physician desicion and very different views by different parents. I also raised some very reality based issues in providing the level of care necessary for these infants/children.

I take no position on what decision I might make. This is NOT the one I tried to send.

some one has to make very hard decisions at the moment of birth and that someone is the physician.

Any decision about my child is up to me, not the doctor. The doctor is there to offer opinion and help, but he/she is not there to decide which babies get to live.

I am sorry but if we can afford to rebuild entire cities that are built below sea level than we can afford to take care of those who are helpless. If we can afford pointless, expensive wars that are started on false pretenses and maintained out of pride and patriotism, we can afford to take care of people who are less fortunate.

Sad things happen for a reason and those who we have in our lives for the shortest time sometimes will have the greatest impact on our lives.

I pray that no one ever chalks your life up to a monetary value or for that matter no one ever bases the value of your life on this earth in strictly monetary terms.

May God Bless You (and XIM too)

The parents and the Good Lord decide what is best for the child, not the physician.

Rod, Skoodlebugmomof3, Xim

What a sad way to think about humanity....dollars and cents! How cold-hearted and inhumane would that be?

What if your child was healthy at birth and then developed cancer or was paralyzed...or whatever and needed extreme or lengthy medical care? Will you think about dollars then and allow a doctor to make all the decisions for you? Somehow I doubt it!

Perhaps Shiloh was given this life to teach something to the rest of us...you know...how to be happy and enjoy life, in spite of it's shortcomings...and above all else, to love one another.

It shouldn't be a physician's decision, it should have been the parent's decision and it should have been made at the birth of this baby. She was bound to suffer all her life, physical psychologically. In the meantime, she had not 1, but 2 kidney transplants -- kidneys that could have gone to someone who's life could have been made better and cured of their disease instead of wasted. She was never going to be an adult nor the likelihood of finding a cure to her disease.

Is Rod short for Nim Rod?

There is one who decides who is to be born and for what purpose, thank GOD it isn't you!

i wonder, do you eat meat?

sorry i have to agree that we cannot afford children like shiloh, it shouldnt be the doctors decision but with birth defects like that when she is never going to become an adult and productive member of society we should not have to pay for it, if the parents want to keep someone alive who nature wants to take they should have to pay, conditions that can be cured like cancer deserve tax payer money but its very sad that we wasted 2 good kidneys on someone like her when they could have gone to other children who would now been up and running around and being normal children. sorry people need to take some responsibility and stop breeding on these genetic faults, if you want to breed them you should pay for them

for example downs syndrome - dont get at me im not saying they should be aborted but people are willing to look after them when they are children, of course with hundreds of thousands of taxpayers money, but when they become adults people seem to dispose of them in homes, i only say this because i used to live near a home just filled with downs adults and the mentally handicapped - if you wanted to being this sort of child in to the world you should at least be persoally and financially responsible for them, not dump them on the state.

Rod,

There are a lot of things we can't afford in this world. But one of them is NOT this little girl. I'd like to hear you complain about all the other things you believe YOU can't afford instead of this little girl who never did you any harm or asked even one favor from you.

i wonder, do you eat meat?

What does that have to do with this discussion?

I'm going to say what no one wants to hear. We can't afford the Shilohs of the world. It's simply a matter of hard economics.

And the other disabled children? If you truely love someone you'd do all you could to take care of them, even if they didn't have long to live. You don't give up on the people you love.