I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on April 23, 2008, 12:26:44 PM
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Youngest kidney dialysis girl's transplant after seven years
Exclusive by Martyn Halle And Adrian Butler 20/04/2008
A brave little girl born without any kidneys is celebrating after finally being given a life-saving transplant.
Doctors risked giving seven-year-old Alice Skinner an imperfectly-matched kidney because they were running out of options. Now, two weeks later, the operation has been hailed a success.
Alice, who has been on a strictly controlled diet all her life, has even got hooked on Coca-Cola... doctors say it helps to get her kidneys working.
Her dad George, from Hartlepool, Teesside, said: "We're so relieved she can now lead a normal life."
Alice, whose condition affects just one baby in amillion, was Britain's youngest dialysis patient at six months. Both parents were unsuitable as donors and she spent years on thrice-weekly dialysis waiting for a transplant. Doctors were running out of veins to hook her up to the machine.
Mr Skinner said: "Her options were fading.
"They were talking about tapping straight into her heart for dialysis, which can be dangerous."
Doctors at Newcastle's Royal Victoria Infirmary decided to try an imperfect match instead - the transplant operation was the last of 16 to prepare her body for the new kidney.
"Alice has made up for lost time doing normal things like drinking Coke, eating chocolate and opening bags of crisps," said mum Nicola, 37. "We'll cut back once she's home, but for the moment we're just allowing her to be a normal little girl."
Now Alice can't wait to tuck into her first bag of chips and other foods that were banned.
Hours spent on dialysis with nothing to do but read have left Alice four years ahead in school with a reading age of 11.
Mr Skinner said: "She's dying to go to school every day of the week with her mates now.
"Right from birth it was a fight to keep to keep her alive. We were told she wouldn't get past the first weekend after she was born."
http://www.sundaymirror.co.uk/news/sunday/2008/04/20/youngest-kidney-dialysis-girl-s-transplant-after-seven-years-98487-20388188/
PHOTO Alice Skinner
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This poor girl has no chance of a decent life, and yet probably most non-renal patients reading this report will assume it is a "happily-ever-after" story. Being exposed to the toxic effects of immunosuppressives while she is growing, suffering all the debilities of having been so long on dialysis at such a formative period of her life, and already at her young age starting to use up the limited time her transplant(s) can survive, are all factors which will severely limit her health, functioning, and life expectancy.
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This poor girl has no chance of a decent life, and yet probably most non-renal patients reading this report will assume it is a "happily-ever-after" story. Being exposed to the toxic effects of immunosuppressives while she is growing, suffering all the debilities of having been so long on dialysis at such a formative period of her life, and already at her young age starting to use up the limited time her transplant(s) can survive, are all factors which will severely limit her health, functioning, and life expectancy.
But, stauffenberg, this child is alive -- and there's something to be said for that. I would imagine that that fact alone brings great joy to her parents. While I don't think it's a "happily-ever-after" story completely, at least her story has an "after" right now. Is it going to be a tough life for her? You better believe it. Is her life going to be an uphill battle? Yep, sure is. But, in her case and in the cases of so many others, it's still a life.
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The worst mistake people make is to assume that life in any form is always preferable to death.
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I know of patients who were faced with similar experiences as children and young adults, and they are not only functioning well but they are also enthusiastically advocating for other patients who are struggling.
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The worst mistake people make is to assume that life in any form is always preferable to death.
Then, count me as one who makes this "worst mistake." As long as my mind is in working order, I want life -- any kind of life, with any restrictions, any limitations, or any definitive time left in it. To me, some life would be better than none at all. And, if my mind isn't right, then I really wouldn't know, now would I?
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stauffenberg, This is your own introduction. Maybe you should re-read it.
Before I developed renal failure, I was living a hyperactive life as a university professor at two separate universities, one in England and one in Germany. Suddenly, however, I was struck down by Wegener's Vasculitis, an extremely rare autoimmune disease which transformed me from a healthy, young-llooking man in his forties to a feeble renal paitient in the span of just two weeks. I spent eight years on dialysis, during which I was unable to work and endured a kind of living death, during which my existence was plagued with hypersomnia, constant nausea and vomiting, itching, difficulty concentrating, and exhaustion -- despite my rigid adherence to the renal diet and 15 hours of hemodialysis a week. Eventually I got a transplant, and the effect was immediate and remarkable, since I felt truly awake for the first time in years just minutes after coming out of the recovery room following the operation. In the year since then, I have been able to return to work and feel about 80% as healthy as I did before renal failure. The main limitations I experience are from clouding of the vision due to cataracts forming in response to the prednisone dose; tiredness from persistent low hemoglobin levels; and severe, month-long illness when I get the winter flu. Still, I feel incomparably more healthy than I did on dialysis, and now realize that I was unable to perceive during dialysis exactly how far I had dropped below the level of normal living.
This child deserves the same things you felt. She has an uphill battle but the younger ones seem to tolerate the situation better.
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I am very happy for her and her parents. :2thumbsup;
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Willlie and Winkie: I wouldn't wish on that child "the same things I felt" for the world. She would be better off dying right now than going through all the medical crises I had to go through. Unfortunately, her prognosis is even worse than mine was, given her early exposure to the toxic immunosuppressive regimen as well as all the existing damage to nerve, brain, and skeletal development from being on dialysis for so long and so early.
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I don't know if you read my introduction, but I was born with very minimal kidney function. I got a transplant when I was three (I don't even remember it happening) and now I am 26. I did lead a "normal" life - normal to me that is. I've been on immunosuppressants since I was 3, but to me it's normal. Taking my meds is not a chore, it's just life - a life I am extremely grateful to be living. The only limitations I had growing up were that I couldn't play contact sports! BIG WHOOP! My transplant lasted about 23 years and I do have some kidney function left even if it's not much so it is technically still working.
This girl CAN lead a normal life. I am living proof of that.
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Willlie and Winkie: I wouldn't wish on that child "the same things I felt" for the world. She would be better off dying right now than going through all the medical crises I had to go through.
Oh, goodness, stauffenberg -- this sounds horrible to me! I could never agree with this statement.
In the past 13 years, my Marvin has been through one medical crisis after another -- years of dialysis, a transplant, years of dialysis again, surgeries (42 in all), 21 accesses for dialysis, PD treatments, in-center hemo treatments, home hemo treatments, two pacemakers (first one failed after a month), major health set-backs, loss of his job and career (and income), etc. All of this is attributed to his ESRD.
But, also in the past 13 years, he's seen eight of his nieces and nephews become parents and he's held those eight new great-nieces and great-nephews in his arms. He's been to weddings and welcomed new people into his family. He's laughed a lot. He's volunteered in our community as a youth baseball coach and taught thousands of young boys and girls (ages 6-12) how to play and how to love the game of baseball. He's served as an unofficial advocate for dialysis and helped many people come to terms with their own ESRD and their own on-set of dialysis. He's met thousands of people in the last 13 years and made many new friends. He's served as an excellent example of determination, perseverance, and the will to live despite adversity. He's contributed to society. He's been productive and happy for the last 13 years, too. He's seen many beautiful sunrises and just as many beautiful sunsets. In the past 13 years, he has LIVED a good life.
I think it's all in a person's attitude. If you think life with ESRD and dialysis and transplantation is "the end" of your life, it will be, and the disease will conquer you. However, if you see ESRD, dialysis, and transplantation as something you have to LIVE through and you can still maintain a "good" life despite it and its complications, you will be the victor. My hope is that this child -- just like Marvin -- will fall into the latter category. How miserable life must be for those who fall in the first category!
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Oh, I hope she makes it. I hope she has a wonderful childhood, with many precious and happy memories.
She looks so happy, sitting on the slide.
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I think it's all in a person's attitude. If you think life with ESRD and dialysis and transplantation is "the end" of your life, it will be, and the disease will conquer you. However, if you see ESRD, dialysis, and transplantation as something you have to LIVE through and you can still maintain a "good" life despite it and its complications, you will be the victor. My hope is that this child -- just like Marvin -- will fall into the latter category. How miserable life must be for those who fall in the first category!
Petey, these are such wise words. I completely agree with you. Having lived with kidney failure my entire life, dialysis was just another treatment in a long - yes, sometimes tedious - journey. To me it is no different than the medications that I have to take everyday. Yep, it's true that I have to do these things to survive, but I have a happy life and I'll be damned if I am going to give that up. 2007 was a very hard year for me and there were times when I thought I *was* going to die, but you know what? I lived through it and now I know just how strong I am. Kidney failure sucks...there's no question about that, BUT I'd rather be where I am right now than be dead.
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And I just think we are all different. The main point it seems to me is that none of us can ever truly know what it FEELS like to live in the skin of another person, even if that person has had so called "identical" experiences. We will never have identical experiences because we are not identical nor will we have identical reactions. Some people have always clung to life and hope through incredible adversity, disability etc while others have killed themselves over what may appear to others to be a mere trifle. The only person's life whose quality we can really judge is our own and even then sometimes it is easy to lose perspective. It is for me to judge whether I feel lucky to be alive as it is for this little girl to decide for herself if she should have died at birth. For me personally, I'm still glad I'm in the world although for sure there are and have been times when death didn't seem so bad. Long live hope.
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Wow..no doubt this child will have a rough road ahead. This little girl is here for a reason and she sure looks happy in the picture. I am sure her parents are grateful to still have her. I think she will have a decent life. It may not be perfect (no one's life is) but it will be her life and she deserves to have it anyway she can get it.
I always use to tell people that when your faced with death...life becomes so much more sweeter. You tend to appreciate everything so much more. At least that is how I like to look at it.
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Hi i,m Alice,s dad thanks for all the positive comments, those who have negatve one,s shud look at there own live,s and make more of it ?.
alice has spent many a year on dialyis and never once complained, she has had diaylis since she was 4 days old and 19 operations to prepare her for transplant, of course she has missed time spending time with her peers , but this is a child who know,s no difference, her life to her is normal, we just hope now she can spend time playing with her friends, eating , swimming, having baths, drinking fluids and most of all living her life
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Nice to see you here George. You have a beautiful little girl. All the best to your family and long live Alice and her new kidney. :clap;
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tyvm morein alice,s kidney is doin fine , she is running round with her freinds as if nothing has happened and is going back to school on monday, great i need a break lol , not really thx
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This poor girl has no chance of a decent life, and yet probably most non-renal patients reading this report will assume it is a "happily-ever-after" story. Being exposed to the toxic effects of immunosuppressives while she is growing, suffering all the debilities of having been so long on dialysis at such a formative period of her life, and already at her young age starting to use up the limited time her transplant(s) can survive, are all factors which will severely limit her health, functioning, and life expectancy.
My husbands brother's where young when they got there 1st kidney's and had them for over 20 years(both of them)!!!! Enjoy life they did and still do both with there 2nd gift's of life.
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Willlie and Winkie: I wouldn't wish on that child "the same things I felt" for the world. She would be better off dying right now than going through all the medical crises I had to go through. Unfortunately, her prognosis is even worse than mine was, given her early exposure to the toxic immunosuppressive regimen as well as all the existing damage to nerve, brain, and skeletal development from being on dialysis for so long and so early.
you need a BIG :grouphug; if you really feel that way about a child's life.
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tyvm morein alice,s kidney is doin fine , she is running round with her freinds as if nothing has happened and is going back to school on monday, great i need a break lol , not really thx
So happy for your family. Hope she has a AWSOME day back at school
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tyvm morein alice,s kidney is doin fine , she is running round with her freinds as if nothing has happened and is going back to school on monday, great i need a break lol , not really thx
So happy for your family. Hope she has a AWSOME day back at school
Great to hear she's doing well! :thumbup;
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george -- I'm sending love and wishes for a happy life to your little Alice! She's precious!
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george :welcomesign;. Alice is beautiful and I'll pray her kidney last a lifetime. Good wishes for your entire family and we'd love to hear updates about how she is doing. :cuddle;
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The only person's life whose quality we can really judge is our own and even then sometimes it is easy to lose perspective. <snip> Long live hope.
You are a wise woman, Monrein.
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Willlie and Winkie: I wouldn't wish on that child "the same things I felt" for the world. She would be better off dying right now than going through all the medical crises I had to go through. Unfortunately, her prognosis is even worse than mine was, given her early exposure to the toxic immunosuppressive regimen as well as all the existing damage to nerve, brain, and skeletal development from being on dialysis for so long and so early.
How dare you ?
I know first hand what this beautiful little girl has gone through to get where she is right now. I live just a few doors away from Alice, George, Lucy and Nicola. My daughter manal plays daily with Alice.
Alice is one of the most beautiful, brave and stong people I know. She has met with many problems and been at deaths door more times than most individuals put together will in their lifetime.
How on earth can you possibly write such a harsh, upsetting and very uneccessary statement?
Do you know what ? I am simply the Mother of Alices friend but as a Mother, reading this made me cry for over an hour as if it were my own child I was reading about. It couldnt have hurt me more than if it was my own.
Please please dont let me or more importantly, Alice's parents and family read such negative statements in future. If it has hurt me so much, can you take a minute to imagine what this kind of things must do to George and Nicola ?
Let me tell you a little more. Alice may have been a very ill child - and still somewhat is ( in many respects only time, thoughts and prayers will tell if god willing, things turn out as successful as we all wish for) - yet she will run around, be cheeky and live life to the fullest as much as her friends around her. She wears me out just looking on !
She once last summer wrote me some letters which I have still pinned to my fridge telling me that she 'likes Manals Mum' and other similar things. A child with so many issues of her own and one who only cares for others most of all. How could you not love and admire that ???
I know that, apart from one member, youve all shown support by passing on your thoughts and best wishes to Alice and her family and believe me, its well received. I just hope that the negative statements will stop and the positive ones continue.
Can we keep it that way ?
WE LOVE YOU ........................................... BUMPEA XX (!!)
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You have made the utterly absurd mistake of assuming that because I am the one who has told you the objective, scientific truth about what professionals normally expect to be the outcome in such a case as we are describing, that I have therefore somehow CAUSED that outcome or I am RESPONSIBLE for it. Nature is responsible for the outcome, not me, as should be obvious.
When you insist that we only say positive things on this message board, you utterly and absolutely misunderstand Epoman's entire purpose in creating this board, which was to enable patients freely to speak the truth about dialysis, including the negative aspects, WITHOUT CENSORSHIP. So don't try to appoint yourself censor of what other people can say.
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HI just to let u know alice had a great day back at school and is looking forward to many more with her friends, you can see alice on this website try www.hartlepoolmail.co.uk or www.hartlepoolmail.co.uk/news/our-alice-is-class.4029558.jp :cuddle;
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George, I'm so happy she had a great day back at School :clap; :clap; Thanks for the links.
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Im here to get into no arguments with anyone. I simply refuse to do that as it helps no one.
I did not blame you for anything Alice goes through or has gone through.
I simply said, as others too have also said on the subject of this thread, that some of the remarks made in relation to Alice were uneccessary and caused upset.
I clearly asked rather than as you say, insisted, that we remain positive. This is not for my benefit but rather that of everyone. Surely to remain positive a good thing? It is best for people to be aware of both the good and bad in such situations - I fully agree with that where adults are concerned - but in a previous statement, suggestions were made that she would be better off dead. Was this really not said or are my eyes playing games and my mind tricks ? Surely they are not. I like to leave that sort of thing in the hands of the gods as they say. Its not for any of us to summise on what kind of life Alice will now lead but rather for us to hope that it is a more healthier and as equally happy a life as the pre-op Alice!
Also, science is never exact and not many people are textbook. Each person will respond to treatment somewhat differently than the next. Thankfully, Alice has until now torn the textbook to shreds as otherwise she would never have reached her first birthday never mind her seventh!!
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Alice's story is so heart-warming! It made my day! She is absolutely adorable. I wish her all the luck in the world! :cuddle; :cuddle; :cuddle;
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hiedihi and george -- Don't be upset by the comments made by this site's diabolical master of "doom and gloom." Just realize that he must be a terribly unhappy, pessimistic individual. Try to ignore him; maybe, he'll go away.
I, for one, am absolutely thrilled for little Alice, and I'm sure many others on this site are, too (just read all the other posts). Anytime a transplant occurs and a person is given a "second chance at life," it's a miracle; it's even sweeter when it's a young one. Take care of that beautiful Alice! God must have special plans for her life.
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You have made the utterly absurd mistake of assuming that because I am the one who has told you the objective, scientific truth about what professionals normally expect to be the outcome in such a case as we are describing, that I have therefore somehow CAUSED that outcome or I am RESPONSIBLE for it. Nature is responsible for the outcome, not me, as should be obvious.
When you insist that we only say positive things on this message board, you utterly and absolutely misunderstand Epoman's entire purpose in creating this board, which was to enable patients freely to speak the truth about dialysis, including the negative aspects, WITHOUT CENSORSHIP. So don't try to appoint yourself censor of what other people can say.
Although I rarely agree with Stauffenberg, he is right about Bill's vision for this site. We don't all agree, not by any stretch. Feelings get hurt all of the time, but we all have something in common; kidney disease and all that goes with it. The good, the bad and on rare occasions, the fantastic.
I would have to say the fantastic is that this little girl will have a chance at a happy childhood. Nothing could be better than that.
Congratulations to Alice and her family.
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There you go again, Petey, making personal attacks on me, which is strictly out of place on this forum. I think the moderator should delete any of your posts which involve a personal attack on me or anyone.You don't know me personally, and you have absolutely no right to speculate about what I may be like personally. Ideas, dialysis modes, theories, plans, proposals, opinions are fair game for criticism, but nothing members' personalities.
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Surely when someone writes about letting a young girl die rather than have her face a life as is imagined, they must know it's painful for parents to read. As a mother I am appalled because I want to have my lovely girl with me as long as I can, and if you think that's a selfish act, then that's fine with me. I am grateful for the life we have been given, no matter how hard it has been. There's a lot of love in our home, and I know Jenna feels that love. I grew up in a home that was very different. Would it have been kinder to give us (me, 2 sisters and a brother) up for adoption rather than have us grow up with an abusive alcoholic mother and a dead father? Yes, of course, but that's not what happened. We do the best we can. Bitterness is not an option for me.
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Please, no personal attacks.
Epoman created this site so we can have a voice on the internet free from censorship.
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Censorship is one thing...spouting off about how a little girl would be better off dead is another (and one that I find totally inappropriate on any forum).
I think the moderator should delete any of your posts which involve a personal attack on me or anyone.
..this, however, does sound like censorship.
If one has the right to say a child is better off dead, then another should have the right to say those are the words of a diabolical, unhappy, pessimistic individual.
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Thank you all for your comments, we have over the last 7 yrs learnt to get on with things and not let little problems affect us, the way we looked at it was if Alice can put up with the life she was given, we could have no complaints, we are here to guide her along her path and what ever hurdles present themselves along that route, we and alice will brush past them. :grouphug;
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George, I am just so happy for your family. My husband and his 3 brothers have all had transplants, and yes being in the hospital when a child at times can stink but like they say they really didn't know better. They have all grown into adults and did EVERYTHING all the other kids did sports etc...never really felling like poor me. Some of the post here have truly hurt me as a Mom who has a child who also will need a transplant someday to see someone feels a child is better off dead, please let me say George sorry that you had to read something like that here, we do NOT all feel that way. I wish Alice nothing but happiness just like any other child. :grouphug;
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Oh Petey, youve mad me laugh !!!
And to almost all of you who have posted on here, it is great to see you all being so positive when I realise that many of you have experienced similar stresses as Alice. I honestly believe that it must be difficult to remain optimistic rather than become a downright pessimist and just how you manage it, Ill never know. Im in awe of the majority of you.
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Okarol: thanks for reminding people that personal attacks are forbidden on this message board. Unfortunately, it seems several posters haven't read your message or gotten your point. I wish you would draw it to their attention. I don't attack the personality of other people posting on this board and I don't expect them to attack me personally either.
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I just hope you dont mean to refer to myself as I have not once made any personal remarks ( or otherwise ) regarding yourself.
Im not here to do that and refuse to point blank and thankfully it is clear in black and white what Ive written to date on here. Id have to Logic tells me that n nothing can be confused for something it clearly is not.
Theres just one set of personal remarks within this thread and they dont bear my name as the contributor - Im not at all intending to name names as the contributor knows well enough what they have written without me spelling it out or getting personal.
As I had said before, Im just glad almost all of you have a great positive outlook on life no matter how much life may have inconvenienced you and tried to drag you down.
Having been very ill myself for ten years( not with kidney issues but with Crohns Disease, Ulcerative Colitis, Rheumatoid Arthiritis and Osteoporosis ) I can honestly say that I wish I could have had just half as much optimism as most of you have right now.
I often feel really down but soon jolt myself by thinking of the fact that Im still here and still have a fairly okay standard of health and life for the time being.
Anyway........... less about myself as this is not the place for me to gripe or go on about my own personal health issues but more for me to praise you all for the way you deal with yours.
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While what stauffenberg says is true (the medical part) I trust that her parents will make the most of all the times she does feel healthy. I hope that as she gets older science advances for her sake and ours.
Are you going to educate her on the possible struggles she could face before they happen or will you play it one day at a time?
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We wish you and your family the best too Heidihi. Many people in the world struggle with things that are difficult and distressing and like you I try to take inspiration and be taught by how these resilient people cope with truly awful situations and make the best of what can't be changed. I don't blame people who find it too hard or who are really angry because that too is a way of coping and feelings aren't right or wrong. I just try to live by the motto "It's not the hand you're dealt so much as how you play the cards you've got, how much fun you have while you're in the game and how many people are willing to keep playing with you". I also know that for me it's the little things that can mean the most.
So while I'm on the subject of little things, I trust that little Alice knows she has a whole lot more "family" friends in her corner now.
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Im all for people being informed and arming themselves with both the good and the bad - iy would be quite silly not to I should imagine so I am in agreement with this as most will be. I dont agree with this however where children are concerned as I think children are the most resilient of humans and have a fighting spirit which comes naturally to them whereas we adults have to work on it all so much more. At the same time though, kids feel fear much more acutely than us and so I dont think it is necessary to instill this in them by telling them of 'possible' or 'certain to be' negative aspects. However, I say this with my own child in mind and George and Nicola may well feel differently to me.
Now that Alice has expereinced the other side of life, the one where she has rosy cheeks and a renewed vigour ( just as cheeky mind you!!), it may just inspire her and make her more determined as she grows up to never let anything take that away from her despite what she may possibly face.
Believe me, if you could see her now, the way she has dealt with it all, youd never believe it possible from a seven year old little girl!!!
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Monrein, your motto is very apt.
I think its hard for everyone. We all think we have it the worst no matter what at times but I have for a while began to remember that it is highly likely that theres someone much worse off then me out in the world somewhere. It doesnt neccessarily make me feel better knowing this but more humble and intent on making the best of what Ive got.
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I really dont think stauff meant that he personally wanted hardship on her.
I for example have a very similar problem.
I want children but i was informed that if i have (or rather my gf/wife) has a girl I would pass on my bad genetic disease.
NOW WHY IN THE WORLD would i have a girl to have her go through what i have gone through?
Only we know the hardships that are associated with this disease and believe me Ive had all my friends and family encourage me
to have kids and i say to them , "you have no idea."
I can have a boy and it would not pass on to him.
From my perspective I dont think I will ever have a girl. There is a procedure that separates male/female sperm through chemical analysis.
This procedure is only done for those who would pass on a disease not for people who are trying to choose the gender.
Ethics and all, you know? :)
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In your situation, Id have no issues with you going through a procedure to ensure you avoided this where your children are concerned.
Being chronically ill as I and many others are on here - no matter what you have - has its similarities in many ways and results in alot of the same feelings at times.
I do hope that you do manage to have a child at some point in the future by whichever method necessary to make sure you have both a child of your own and one free from ill health.
I wish you lots of luck!
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:thx;
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Life is precious and Alice's parents are so lucky to have her. Her "normal" life might consist of drugs and treatments but that is normal for her.She knows no other!!! She needs to be able to get all she can out of life. As with most dialysis or transplant patients things have to be taken one day at a time. The treatment has to be accepted as a part of your life which it is with Alice because it is all she has ever known. She seems like a normal well adjusted little girl who has a medical problem. I have taught developmentlly delayed individuals and I have gotten the same arguement from people. Why keep them alive when they aren't going to contribute to society. Many of these kids do participate in society just by being so loving to other people. They are a lot more accepting of differences than most of us. Every body has a right to life!!! Who are we to decide if their life is worth living. Bet if someone asked Ace she would give a :2thumbsup; to life!!!
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Ill tell you something del, theres nothing lacking in alice !! Due to her tuition both at school and during periods in hospital, she's well ahead of her peers which is fab !
Shes almost as clever as me and I'm 27 and 3/4 !!!!
Shes very adult in many ways and some of the things she does - rolling the eyes at me behind Manals back when Manal is getting a telling off is the best one !!! Its so what I would do usually haha!!
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Please, no personal attacks.
Epoman created this site so we can have a voice on the internet free from censorship.
I'm not quite sure Epoman was against responding to a poster's comments in a way that might also be directed to the person directly with words such as "stupid" or "outrageous" or "evil" etc. I think Epoman was just against using curse words in the forum.
If a person makes an idotic statement, or a dangerously ignorant statement, we should be able to call him/her on it. If they take it personally, so be it.
The alternative is censorship.
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Since it is a fundamental prerequisite of all civilized conversation that while ideas may be attacked, the people presenting them cannot be, I think we owe it to Epoman to presume that he was not a barbarian and so would not have wanted to allow personal criticisms on his message board.
Since you have mentioned elsewhere the United Nations Human Rights Convention regarding standards for legal systems, consider the various international conventions (such as the International Covenant on Civil and Political Rights) which affirm free speech but deny the right to libel anyone. Forbidding libel has never been viewed as censorship of legitimate free speech.
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Since it is a fundamental prerequisite of all civilized conversation that while ideas may be attacked, the people presenting them cannot be, I think we owe it to Epoman to presume that he was not a barbarian and so would not have wanted to allow personal criticisms on his message board.
As a barbarian myself, I highly disagree with your presentation.
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When I was first "lurking" on this site, I read through a bunch of old threads. I saw several "heated" discussions -- even one where Epoman called a poster on here a "stupid ass" (I think it was sandmansa). From what I read that Epoman wrote (and he was gone before I came, so I didn't know him personally), I THINK Epoman said exactly what he thought. And, I believe that that was his vision for this site.
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When I was first "lurking" on this site, I read through a bunch of old threads. I saw several "heated" discussions -- even one where Epoman called a poster on here a "stupid ass" (I think it was sandmansa). From what I read that Epoman wrote (and he was gone before I came, so I didn't know him personally), I THINK Epoman said exactly what he thought. And, I believe that that was his vision for this site.
Thank you petey, for setting the record straight.
I did know Epoman, and you have stated his vision correctly.
stauffenberg calling us barbarians won't shut us up.
8)
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To get back to the original article, I admire Alice and her family. No one has a perfect life. This is a chance to give Alice a better life. It may not be "normal" in some people's eyes. Transplant is not a cure, but a treatment that can improve one's quality of life. Best Wishes to Alice and her family.
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Thank you Romona, for bringing us back to the topic.
I hope we get updates from George and that Alice is feeling great!
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Alice in kidney op drama
27 August 2008
By Peter Tennick
A SICK youngster was rushed to hospital in a mercy dash to save her life – four months after having a vital kidney transplant.
The parents of seven-year-old Alice Skinner today revealed how they feared the worst when their daughter "turned grey and her lips turned blue".
Dad George said he rushed Alice from their home in Templeton Close, in the Clavering area of Hartlepool, to Newcastle's Royal Victoria Infirmary in just 24 minutes.
He said: "Her temperature was 41 degrees centigrade.
"It was touch and go."
George now believes Alice may have suffered an infection after having a tube removed from her neck in an operation when she was taken to hospital suffering from dehydration earlier this month.
George, and Alice's mother Nicola Andrews, 38, took Alice to hospital just days before she was due to appear as a mascot at the British Transplant Games, in Sheffield, as she had been suffering from headaches and was being sick.
George, a salesman, said doctors conducted numerous tests on the youngster, including a brain scan, to rule out various possibilities.
However, doctors ruled out a brain tumour and later confirmed that Alice was only drinking half of her recommended intake of water – she needed to drink two litres for an adult kidney, rather than the one litre she was drinking.
George, 39, said Alice was placed on a drip as she had lost half a kilogram in weight in a day.
He added: "The doctors said even though she was drinking about a litre a day it wasn't enough for her because it was an adult kidney.
"She was drying out without us knowing. Her body was starting to pull fluid from her skin.
"We got her fluids up, and her kidney function came back alright."
Alice was released from hospital and went to the transplant games, which she enjoyed.
"She has a really high pain threshold and seemed to get through it okay," said George.
But last Sunday, George returned home from work to see Alice turning grey.
"Her lips were blue and her face started to go grey and she started to shiver.
"Her hands and feet were freezing.
"I jumped in the car and took her straight to hospital.
"I did Hartlepool to Newcastle in 24 minutes. If we had been stopped I'm sure we would have been let through because Alice was in the back turning blue.
"The doctors couldn't find out what it was. It was like her body was shutting down. It was lucky we spotted it."
Alice's body was "bombarded" with anti-biotics and is now recovering, said George.
He added: "We are now making sure she drinks at least a litre through the night. She is on a machine to make sure she gets fluids all night long.
"At the moment, that seems to be working well, but we need to make sure she gets her fluids when she goes back to school."
http://www.hartlepoolmail.co.uk/news/Alice-in-kidney-op-drama.4429205.jp
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My thoughts and prayers go out to this beautiful and strong little girl and her adoring family. :grouphug;
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Kidney op girl's thank you to donor family
Published Date:
07 October 2008
By Mark Payne
A YOUNGSTER is set to pen a heartfelt letter of thanks to the family of an organ donor whose kidney changed her life.
Eight-year-old Alice Skinner, who was born without any kidneys, is loving life since getting the vital organ in a five-hour operation six months ago.
She is now allowed to make contact with the donor's family, and plans to write a letter with her 38-year-old mum Nicola Andrews.
In it she will tell how her new kidney means she can swim, ride a bike, do gymnastics and eat her favourite foods.
Dad George Skinner, 39, said: "Alice is doing really well at the moment. It has been six months since her operation so this is the time she can write to the donor family.
"In the next week she is going to compose a letter with her mam and write explaining what a difference it has made to her life and all the benefits."
The operation means Alice can learn to ride a bike and swim – something she was unable to do previously when she was going to hospital three times a week for dialysis treatment.
She also enjoyed her first football match when George took her to see Hartlepool United last Friday night.
Alice, who attends Clavering Primary School, still has regular hospital checks in Hartlepool and Newcastle every two weeks to make sure the kidney is working as it should.
But George, a salesman, of Templeton Close, in the Clavering area of Hartlepool, added: "From going three times a week all her life to twice a month it has made a real difference.
"Alice has to be really careful about getting any knocks because of where the kidney is in her body but she knows her own limitations. She has a busier life than me with her dancing, brownies and swimming lessons.
"She has just learned to ride a bike and it is a nightmare trying to keep up with her."
Alice received her new kidney on April 4 at Newcastle Royal Victoria Infirmary after a four-year wait to find a suitable donor. The family hope to take her abroad for the first time when they celebrate her first anniversary next year.
http://www.hartlepoolmail.co.uk/news/Kidney-op-girl39s-thank-you.4564526.jp
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:flower; :cheer: GO ALICE GO :cheer: :flower;
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Hi all sorry for being away for a while, as you all will understand now alice is free from dialyis it,s hard to get anything done as she now has a busier social life than both her parents, also alice has had a few problems since october, nothing to do with her transplant thankfully. alice was suffering headaches last summer and her consultants sent her for a couple of scans, these produced a few problems, mainly that they found a build up of fluid on alice,s brain and a major blockage in her spine, the only remedy was another operation, which was a foramen magnum decompression, the condition was called type 1 chiari malformation which alice underwent a 4hr operation on april the 3rd 2009 and came home last nite a bit bruised and sore, but thankfully home, will write again soon yours george, it was strange that alice was back in surgery exactly a year to her transplant.
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Wishing Alice a speedy recovery so she can get back to being a social butterfly. :grouphug;
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:grouphug; Hope and pray that Alice recovers quickly. :cuddle;
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Prayers for Alice :grouphug;
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with all the kind words i,m sure she will soon be back on her feet and running rings around us oldies, the updated picture is alice,s skool pic from last week which everybody thought she had matured into a proper little girl in the last year :basket:
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I'm so happy to hear how Alice has been doing! I'm sorry she had that bump in the road, but she's young and will bounce back ten-fold. Her school picture is gorgeous and she is turning in to a beautiful young lady! :grouphug;
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:cuddle; Hugs to you and Alice George. I hope she is up and running around in no time.
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Prayers to all of you and hope Alice heals up real fast.
:grouphug;
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http://www.hartlepoolmail.co.uk/news/It39s-a-gold-and-silver.5529271.jp
thought i would put this link in for everybody, alice has just come back from the british transplant games,
hope this finds every one well,
cheers George
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Thanks so much for the update George. I often think about your family and it is such good news to hear that Alice is thriving. :flower;
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That is just gorgeous! How awesome!
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Thank you for the update George. Alice looks wonderful and the article was great! It warmed my heart to read it.
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:cheer: Go Alice Go!! :cheer: