Youngest kidney dialysis girl's transplant after seven years

[hiedihi]

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 (!!)

[stauffenberg]

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.

[george]

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

[lola]

George, I'm so happy she had a great day back at School Thanks for the links.

[hiedihi]

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!!

[paddbear0000]

Alice's story is so heart-warming! It made my day! She is absolutely adorable. I wish her all the luck in the world! 

[petey]

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.

[vandie]

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.

[stauffenberg]

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.

[okarol]

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.

[okarol]

Please, no personal attacks.

Epoman created this site so we can have a voice on the internet free from censorship.

[petey]

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.

[george]

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. 

[lola]

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. 

[hiedihi]

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.

[stauffenberg]

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.

[hiedihi]

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.

[migaguiar]

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?

[monrein]

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.

[hiedihi]

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!!!

[hiedihi]

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.

[migaguiar]

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?

[hiedihi]

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!

[george]

 

[del]

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  to life!!!