Can you help a young lad?

Oh bless.

Card on the way from me and the wife.
 
one in the post first thing....
 
BenMottram said:
Ok, so my wish not to increase the posties workload was seen as offensive.

Did I actually say anything about the boy, or his condition? Did I imply that I thought the whole thing was a scam of some sort?

I did say that many people who have made similar pleas for things to be sent through the post have been victims of the internet - the story gets spread around by many well wishing people, and this ends up in the real world equivalent of an email based DoS on the address concerned.Example

I have not stated where I stand on the position of this lad or his family. I just commented on the possible outcome of a "mail a card" campaign and that, bearing this in mind, I wouldn't be sending a card.

Ben
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Hey, better to be via post than email.

I post all my junk mail back to keep the posties in work!

Card on its way ...
 
Blummin Eck !:crying:

It's so easy to just plod along in life when everthing(almost) is going ok, then you hear a story like this.

It makes me think about, not only this young lad but all the other Kids and Mum's n Dad's out there that are suffering or going through some sort of first-hand grief.

It is very sad and I wish them and everyone else in a similar situation all the best.

P.S.

I didn't see BenMottram's original post, as it has been removed but, I must say, I think he makes a good point in his later post (the one with the link).

There is a massive difference between getting 100 extra cards which would be brilliant for him and should definately make him smile, to getting 10,000 or even 1,000,000. I can imagine that it is easily possible for something like this to get out of control and become a bind for the family.

Just my thoughts !(don't judge me by them)
 
Card on it's way tomorrow(y)
 
feeb said:
button it scrooge
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LOL .... Ben is right in a way especially if it was just any old forum but here at TP we are a different breed ....we have morals and Ben has sent his card like the rest of us soooooooo lets wish Chris all the best
 
This is such a sad story we will be happy to post a card out. We know what its like to loose a child, we lost our first son at 6 months old, it was a 14 yrs ago but it still hurts.
I'm sure the young fella will have a great day, his mum sounds a remarkable lady.

Dean
 
Just a medical note here just how? does a Tumor run from the Stomach to the ankle? and why would he want a bunch of cards? which I assume most good people will but a tenner in.
I am just playing devils advocate here, and in no why stopping anyone from giving to a good cause. I work for the nhs and we get this all the time, 99% of the time the families will not want a fuss. Sorry to put a spin on it but I am passionate about this subject. Thank you
 
poor kid..

look at everyone's support!! amazing =)

sad though
 
ariana said:
Just a medical note here just how? does a Tumor run from the Stomach to the ankle? and why would he want a bunch of cards? which I assume most good people will but a tenner in.
I am just playing devils advocate here, and in no why stopping anyone from giving to a good cause. I work for the nhs and we get this all the time, 99% of the time the families will not want a fuss. Sorry to put a spin on it but I am passionate about this subject. Thank you
Click to expand...

Ariana, you are entitled your view, but another member has vouched for this familly and it all seems totally true, I consider myself to be a good person but will not be putting any money in an envelope the request was for a card, you either go with it or not. NO request fror money was ever made and I'm, sure that if the familly wanted to raise money for a good cause they would ask people to donate to a specific charity involved with children/cancer.

I know their are plenty of scams out there, but i'll give it a go !!

Dean
 
Here's a copy of the email Ann-Marie sent to explain young Chris' condition: (in parentheses are my additions)

My name's Ann-Marie and I'm the 'mum' referred to in Chris' (Grockle's ) post on your forum mentioning the lad Chris with a terminal illness...

I just wanted to say thank you for letting Chris start his thread... My Chris has a sponteneous occurance of a genetic condition called Neurofibromatosis... A really common condition which has a variety of problems but normally people live with it fairly well... One of the side effects is benign growths on the ends of nerves or a rarer, invasive type which Chris has got running from his tummy to his shin on the one leg... Unfortunately, the invasive growth has a small risk factor for undergoing malignant change which is what's happened to Chris... The underlying growth is just too knotted in with his regular body bits to have been able to remove it and it's not a malignancy which responds to chemical interventions...

We had the diagnosis back earlier in the year and have just been taking day by day and enjoying every moment we can... Now we're coming to the latter stages he's very sleepy and got lots of lovely drugs on board... But he's fixed on his birthday which is why I had the idea of asking the people I knew on my own forum (after a lot of thought) if they'd mind sending him a card to pad out the usual ones and just make it a little more special for him...

I've been especially touched that it's kinda taken a life of its own... I know Christmas is tough for many people this year and we're all busy bees with lots going on... So seeing complete strangers taking a moment to express their concern and do something to benefit someone they've never met is very humbling...

I wanted to assure you though that your trust has not been misplaced... Although I can very much understand that some people might take things these days with a pinch of salt given how many scams and cases of fraud and half truths can be attributed to the internet... This situation with my lad is totally genuine and he's under the care of the oncology team at the University Hospital of Wales in Cardiff... Tis just one of those things in life where it goes a bit pear shaped and all we can hope for is a comfortable time with as little pain and difficulties for the lad as possible...

Take care

Ann-Marie Hopkins xxx

Hope that clears up a few things for the medical profession amongst us. All I know is that Ann-Marie asked on her own craft forum if cards could be sent to brighten up a young lad's last bit of time on earth and I asked her and Marcel if it would be ok to post the request on here.
 
deanlewis said:
Ariana, you are entitled your view, but another member has vouched for this familly and it all seems totally true, I consider myself to be a good person but will not be putting any money in an envelope the request was for a card, you either go with it or not. NO request fror money was ever made and I'm, sure that if the familly wanted to raise money for a good cause they would ask people to donate to a specific charity involved with children/cancer.

I know their are plenty of scams out there, but i'll give it a go !!

Dean
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I will give a Tenner to macmillan nurses. They are the best as know from experience. I wish the lad all the best and I will send him a card (I am guessing a 14 year old lad may want a saucy card? any ideas guys)
All the best
 
Thanks Chris. I didn't want to copy the email she sent me, as it wasn't my place to :)

Needless to say, I'm honestly touched at the friendliness of people on here. I know we've got a really good community full of friendly, good natured, and helpful people. Sounds soppy and cliched, but I'm proud to be a part of it.

So while everyone is entitled to their views, please don't ruin what is a nice gesture by some people, by being a doubting thomas full of negativity and cynicism.
 
Cheers Marcel. It is a truly wonderful response from people on here and I know Ann-Marie is absolutely gob-smacked at people's kindness.

Pleas note that there has not been, and will never be, a request for anything more than a card to be sent to Chris this one time.
 
Neurofibromatosis has a rare chance of getting 'cancerous' , this is not a Tumor that will be removed easily , or not at all. Hence it is knotting around various veins and blood vessels. However treatment may slow the growth and hopefully stop it all together, but from the post, I believe the prognosis is short. Let me say I have these growths myself on my thigh and buttock. they are perfectly benign and so many people get freaked out by lumps and bumps! the message is , tumors are rare and a bitch to treat , most people have many lumps and bumps, dont panic , go to the GP and put your mind at rest.
Thanks you all for reading my rant
Ariana
 
Me and my girlfriend are goingto send one each so that he has more cards. Every little helps :) For anyone who is a bit iffy about this, just think if it was you in there situation (y)
 
ariana said:
Just a medical note here just how? does a Tumor run from the Stomach to the ankle? and why would he want a bunch of cards? which I assume most good people will but a tenner in.
I am just playing devils advocate here, and in no why stopping anyone from giving to a good cause. I work for the nhs and we get this all the time, 99% of the time the families will not want a fuss. Sorry to put a spin on it but I am passionate about this subject. Thank you
Click to expand...

Dear Ariana...

I'm Ann-Marie, the mum in question... :)

Marcel invited me to join and I do need to extend my heartfelt thanks to him, Grockle and anyone else who has contributed to this thread or is planning on sending my son a birthday card... I have been overwhelmingly touched by the support that has been offered and the fact that 'strangers' are willing to take a little time to express a kindness... With his birthday approaching I figured it would be nice if he received some extra cards to give him a little lift...

As far as the medical aspect is concerned... Neurofibromatosis (NF1) is a benign condition which causes a number of different problems - chief amongst them being the development of growths/tumours called neurofibromas on the nerve endings anywhere throughout the body... There is also a chance of developing a more invasive and painful growth called a plexiform neurofibroma which develops at a nerve root and grows along the nerve pathways... A little bit like the way an ivy might sprout at the base of a tree trunk and gradually cover the tree, extending along the various branches and twigs...

In Christopher's case, the plexiform started at the bundle of nerves in the pelvis where they exit the spine and has grown along those so it's through the tummy, down through the groin and through the musculature of the left leg - just following the nerves where ever they go... With this type of more invasive growth there is a small life time risk that it can undergo malignant change and unfortunately, whipping it all out surgically is really the only option... Given the unusually extensive development and position of Chris' plexiform, this was just not an option...

NF1 is really common with a 1:2500 incidence rate where half of newly diagnosed are spontaneous cases and half are inherited... I must stress that Chris' problems from the disorder are very much at the thin end of the wedge and that most people with NF1 will lead fairly normal, productive lives with a normal lifespan... It is a difficult condition to live with because of the lack of predictability - but it will very rarely cause the troubles that Chris has had... As already mentioned, the statistics, in his case, just haven't worked in his favour...

He is an amazing, 13 yr old child (well I would say that! :)) who is very comfortable at the moment courtesy of a great medical team and some wonderful drugs... He's not aware of his prognosis as there are some learning difficulties and is just rolling from day to day with not one single complaint, not a single 'why me' and not a single wish that his life were different... I have learned a lot from my son...

You mentioned about people putting money in envelopes and honestly, that's really not something I was hoping anyone would do... As you rightly surmise, this is all about my lad and something that will perhaps put a little smile on his face which brings immeasurable pleasure to me right now... I don't mean to sound ungrateful, but if anyone did want to do something like that I'd rather suggest they donate a little to either Latch Wales or Ty Hafan's Childrens Hospice as they are both organisations who give us emotional support and also to other families in the same situation who perhaps aren't as lucky as we are to 'meet' such wonderfully kind people...

Again, my thanks to everyone who has thought about my lad and wanted to put a little smile on his face... Love and best wishes to you all...

Ann-Marie x
 
Still not sure, sorry Ann-Marie. Again I will give to Mac Nurses and the Hospice you mentioned, but your story does have some inconsistencies, which I will not go into here.
Again all the best and again I will send a card and a fair amount of money to the causes mentioned.
XX
 
Hi Ann-Marie,

Thanks for signing up and welcome to the forum.
I hope the cards he receives do put a smile on his face as hoped.
It's amazing that a child so young can be so strong and mature in the face of such problems. Such an attitude can teach us alot about ourselves, and is quite humbling IMO.

Thanks for signing up and taking the time to say hello too.

Regards, and best wishes to you and Chris.
 
My youngest lad's initials are CJ so he gets called CeeJay too, it brings it home just how fortunate we are that he is healthy. You sound so much braver than I could possibly be, Ann-Marie, you'll be in my thoughts... bless you all. My card will be in the post tomorrow.
 
Such a sad story ,mine and Petes thoughts are with you and your family at this time Ann-Maria and a card will be in the post tomorrow. He sounds a really lovely young lad. God bless you all
 
ariana said:
Still not sure, sorry Ann-Marie. Again I will give to Mac Nurses and the Hospice you mentioned, but your story does have some inconsistencies, which I will not go into here.
Again all the best and again I will send a card and a fair amount of money to the causes mentioned.
XX
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Thank you Ariana... We don't have the Mac Nurses as they deal more with adults... But I have heard they do sterling work and bring a lot of comfort to affected individuals and families... We have been lucky in that we come under the care of the oncology outreach nurse team who care for the children who spend their latter time in a home environment... Ty Hafan Hospice is a wonderful place... A beautiful setting, wrapped in love and staffed by angels in training... They offer respite to under 19s with life limiting conditions...

As far as his condition is concerned... One of the more difficult complications of NF1 is a plexiform neurofibroma which in CeeJay's case is more extensive and has grown more quickly and at a younger age than would be expected in most individuals... The potential for malignant change is a life time risk of between 8 - 15% - no study has worked out definitive stats...

So no inconsistencies... Just an unfortunate roll of the dice that he developed the NF and that it then took such an aggressive course in him...

If you have NF yourself and/or the lumps and bumps... I wish you all the very best... Stay well and take good care of yourself... x

Marcel said:
Hi Ann-Marie,

Thanks for signing up and welcome to the forum.
I hope the cards he receives do put a smile on his face as hoped.
It's amazing that a child so young can be so strong and mature in the face of such problems. Such an attitude can teach us alot about ourselves, and is quite humbling IMO.

Thanks for signing up and taking the time to say hello too.

Regards, and best wishes to you and Chris.
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Cheers Marcel...

He really is a lad n' a half...:) He's never complained... Not once... Just takes each day as it comes and makes the most of what time he can... He's always been that way even though his condition has been progressive for him over the years... I think one area we have been lucky in is having such a great medical team both at the hospital and in the community... Because they have known him for years it is quite personal to them as people and they have bent over backwards to make him as comfortable as possible...

And most of all... We had notice of his prognosis and have been able to make the best of the time we have... Something we should all do but in reality life is just too busy... It has been an undoubtedly hard time but it has also been filled with some of the most beautiful moments which will become amazing memories...

You don't expect to take your children on such a journey but you kinda just muddle through as best you can to make their time the most comfortable it can possibly be... And trust they leave a little something special with you along the way...:love:

Hugs n' best wishes to everyone x
 
I will give half my wage to Mac nurses all year , they are the best. This story however is not quite there for me lads.
Sorry Guys . I may be wrong but in 90% of end of life patients they really dont want cards and stuff! And as I said before , they may not ask for it , but how many good folks stick a Tenner in! x (I hope I am wrong but these scams , you can tell)
 
For the sake of the young lad and bringing a smile to his face, I doubt anyone would worry about the motives, I certainly do not.. I do not really see there is any benefit in stating your concerns in a thread that is trying to do something to bring a little bit of happiness.

Not getting on my high horse or anything but it just seems counter productive.

A card and some birthday cheer, cost nothing in the scheme of things.
 
ariana said:
I will give half my wage to Mac nurses all year , they are the best. This story however is not quite there for me lads.
Sorry Guys . I may be wrong but in 90% of end of life patients they really dont want cards and stuff! And as I said before , they may not ask for it , but how many good folks stick a Tenner in! x (I hope I am wrong but these scams , you can tell)
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hmm....does one smell a bit of pot calling a kettle some dark colour here?
 
ariana said:
And as I said before , they may not ask for it , but how many good folks stick a Tenner in! x (I hope I am wrong but these scams , you can tell)
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Hi badronald / ridgecrisps :wave:, had a sex change have we?

*goes off to find the ban button*

Oh look! there it is.

badronald / ridgecrisps / ariana.....i.e. Mr Jonathan Northfield...don't register on our forum again.

Just to make it clear to everyone. ariana is a previous member who has already had TWO usernames banned due to dodgy trading practises, and deceiving money out of members.
I have little doubt that any of what he/she says about this condition and their knowledge of it is true.
 
Anyway, now the troll is safely back under his bridge....Sounds like a great idea :)

I have just been designing a few cards so good excuse to get some printed out and one sent (y)
 
Marcel said:
Hi badronald / ridgecrisps :wave:, had a sex change have we?

*goes off to find the ban button*

Oh look! there it is.

badronald / ridgecrisps / ariana.....i.e. Mr Jonathan Northfield...don't register on our forum again.
Click to expand...

Raise a glass of the great great british ale... for the best landlord in town...


Hip Hip Hooray
 
I will give half my wage to Mac nurses all year , they are the best. This story however is not quite there for me lads.
Sorry Guys . I may be wrong but in 90% of end of life patients they really dont want cards and stuff! And as I said before , they may not ask for it , but how many good folks stick a Tenner in! x (I hope I am wrong but these scams , you can tell)
Click to expand...

This "person" it or whatever - has been rubbing everyone up the wrong way when they have come across in whatever manor of speaking. Going on Marcel's post obviously someone we've had previous trouble with.

This story does ring true, and I'm sorry but if he doesnt know what his prognosis is, then loads of cards from "complete" strangers will make the lad feel overwhelmed and wonderful.
I am a good folk, and I wont be putting any money in the card because it has been asked for a card....thats all. And how much money is that going to cost? A couple of quid at christmas-time. Its nothing.


My friend has a condition where she gets painful absesses and stuff. They have no idea what causes it. She had to have her armpit completely removed, and a skin-graft taken off her thigh to re-build. And she had one on her coyccix [sp?] that again she had to have surgically removed. They dont know what causes it, nor do they know that one day....it may turn cancerous.

Some people see the bad in everyone.....and whoe-ever that person is that marcel is banning....I hope they suffer slow and painful - hanging by their testciles sounds like a good plan :)
 
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