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Josh`s Mum

Make Josh`s Day

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Josh's Mum,

The card from me is in the mail today..... :-)

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Hi Steve,

Thank you for the offer to post Josh a card from London and Spain ..... we will soon have every country covered just by this forum !!!

I will send your warm wishes to Josh ...... who spent some time yesterday reading over these post and getting very excited about the coming weeks of cards.We wont let him open the cards/letters till his surgery - but we will let him read the post stamp or the sender address so he can start his computer data chart of where the mail has come from.

Ampskier ..... I would love to chat ... we have never taken the kids to the snow because of Josh`s fragile leg situation -but after the op we may consider a family ski trip.

Debbie

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Hi Debbie,

i only just read this posting....

and a card from Germany on it's way Down Under!

All the best for your son!

Children tend to have an extraordinary way of dealing with whatever life throws at them and just getting on with it. So, he should be alright!

cheers Karen

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Hi Debbie and Josh,

Have just read your posting, I also will be having a RBK amp in the next few months, haven't got a date yet.

I have written your address down so I can send you a card, it may only be a greetings card, thats my new hobby, making them, because I don't reckon I'll be going anywhere interesting for a while.

I've had trouble attaching a photo as well, how did you do it in the end? :(

Do you live anywhere near West Warratah, I have an Uncle who lives there?

Hope everything goes well for you, keep us posted. Bye for now.

Pam R.

:huh:

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Hi all,

Thanks again for your continued interest.What a huge photo of Josh ! Johnny v help !!! Josh loved the photo because he has spotted his pet rabbit in the back ground amongst the camillia bush - he is white.

Karen ......A card from Germany excellent ! we are expecting a few from Germany as we have rels living there.

Pam R. ....... hi there, sorry to hear you will be having an amputation (can you tell me what the letters RBK stand for ?)Thanks for the offer to make Josh a card ... card making is a great hobby. About attaching the photo you will need to ask Lili - as she has kindly posted it for me.

Lesley ....... angelic - I agree but I`m incredibly bias

Debbie

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WELL DEBBIE, rbk stands for right below knee OK I do hope Josh will receve all his card Keith

Powys Mid-Wales :P

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Hi Debbie,

I've only gone and spelt received wrong :rolleyes: and somebodys bound to spot it what a dip stick no worrys mate and g/day to you josh you look a HAPPY BRIGHT LAD you will do OK mate, keep your pecker up sport loads & loads of luck but I don't think you need it your halve way there mate, Keith from Wales UK B)

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Hi Keith ,

Thanks for the RBK explaination,there goes another spelling error I think !

Debbie

post-12-1083166521.jpg

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Hi there,

I have just posted a smaller photo.This is Josh with his little brother Luke.

Lili could you please delete the HUGE josh .

Cheers

Debbie

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G/day Debbie,

that's cool it's mostly to do with amputations and your son's look like a right pair of scallywags, Hellow LUKE and how's it going with you mate?? :P I didn't know you had to rogues in you home, ha,ha,ha, I better watch out no danger look after your mum lad's she's golden one in a million no sweat, catch you later B) Keith from Wales UK

Abbreviations, ak above knee & L & R left & right

bk below knee

LOL laugh's out load don't think I'm a know it all I asked what LOL was so there Debbie we do learn some thing each day, I bet you would have lost sleep if I hadn't told you all of this and that's a "joke" :P I haven't for got you Josh matey boy easy know :unsure:

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Debbie,

What handsom little boys you have there.. At first I thought they were twins.. Watch out in a few years they will be breaking some little girls hearts.

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Thanks Johnny V I think I have worked out the whole photo thing - the full photo is of Josh on his skateboard - shows his present leg situation well.

G/day Keith ...... scallywags sometimes.

Brenda ........ I see you like red heads ! They are 16 months apart.

Debbie

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Hi Debbie, as of this morning a card is on its way to Josh. I hope it makes him as happy, as it did me sending it. :D I must say, you have two good looking boys there. ;)

Sheila, LBK

Maine-USA

Keep Smiling :)

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Thanks Shelia, it will make Josh happy to receive your card. I will let you know when it arrives.You may have to wait till July for him to respond to you but he will he loves letter writting/Art

Hi Lili ....... the half Josh can stay ........... thanks for all your help.

Debbie

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Hi Debbie,

I came across the condition Neurofibromatosis for the first time when a woman affected by N II asked me to do some PR for her self-help group. Being a journalist, I have also written an article about neurofibromatosis, since I thought that the public should learn a bit about it.

In the course of my research I learnt that the vast majority of people affected by N develops the first symptoms in their teens/twens, so obviously your boy is an exception to the rule. Which N does he have - I or II?

Is Josh´s hearing affected as well? This woman who founded the self help group became deaf and almost blind in a short time and also has major problems with tumors on the spine, causing her a lack of balance.

Regards,

Gizmo

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Would you believe I had the same exact problem! I too lost my leg to NF but I was onlt 3 when they took off my leg. I will deffently send josh a card...and a letter.

Eric

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Lili, i'll get back to you in another posting !

:D

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Hi Gizmo,

There is a great Neurofibromatosis ( NF ) website you may be interested in....... www.nf.org .......

Yes most kids find out that they have NF when their in there teens as that is when the small tumors start appearing.Josh is the exception as he has other compliaction contected to the condition.

Josh has NF1 which generally does not affect the hearing or balance.

Here in Australia we have a great support group for people with NF.I work as a volunteer for the association . - I run a kids support network - we have picnics , camps , movie days , ect..... the web address is www.nfaa.org.au check it out.

Ampskier ..... Hi there, I have send you an email .... its a small world ..... Josh will really appreciate your card because of the medical conection.

Bye for now

Debbie

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Hi Debbie,

I know this site since I did some translations for this Austrian woman with NF about the founding of the group, the initial meetings etc.I am not sure, though, if the self help group here still exists - with Austria being a small country there are not too many people affected and I think most of the people coming to the meetings at first were type I which has, as you know, different characteristics.

Is there any NF in your family - as far as I can remember it is a hereditary condition..?

Regards,

gizmo

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Hi Gizmo,

Austria is a small country and I can see it would be difficult to maintain a support group.It`s similar here in Australia - we have a huge country with a small population.Josh`s NF friends are spread out afar,but thanks to the internet we can stay in touch often.

NF is a hereditry condition but Josh is a "spontaneous Mutation" - I hate those words !! but they mean his NF has started with him .

Regards

Debbie

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I got my NF from my mom who got it from her dad. Before that we don't know.

I'm not involved with any NF suport group. Know of ony in the Eastern California/Western Nevada area.

Every time I visit Nevada I think of Bill Dana as Jose Himenez, the couardly astronaut.

Interviewer "Surly NASA has provided something to break your fall"

Jose "Oh yes. The State of Nevada"

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Hello Josh

You have a very special mom... I was reading what she had wrote and it was so special, so sweet that made me go on reading all the replays. Usually I don't write because my English isn't very good but since you are a kid I know you would not think much about someone who can't spell very well. I am going to be in Bahia, Brasil (from May to June) and I will mail a post card from there. I used to have a bunny all white with red eyes who was better trained than my dog Kiss is.

My bunny loved chocolate, pasta, celery and ment. When I came home from work he used to jump and run in circle, kick his back legs, he just would go crazy. I was so happy to see him as he was to see me. Nobody could believe that he use a litter box. I really miss him. He is in Heaven now but I am sure he is having lots of fun up there.

Hope to hear from you someday.

Lots of love from this brazillian to you

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