How did you end up going???

As a suggestion … try and find out who these ppl are maybe you can email them or another thing you could do is start up a support like page and or group for awareness and hopefully add these ppl to the group. Try and see if there is any online support groups maybe there are some that are OS.

A really good ent surgen that comes highly recommended is hard to find. How did you end up going? Hope it all worked out!

Did you manage to find a good support group?

what a difficult time – I hope you found the support you needed

i hope you found a good group

Maybe the doctor or surgeon can you refer you to one

Hope you managed to find what you were after.

How is he going now?

Good luck I haven’t heard of this before

I have never heard of it but hope you have managed to find the support that you are after.

Oh gosh, this is so unfair for you and your son. I hope you find some support group. Ask your dr about it, they may have a list of contacts.

Never heard of it but good luck

I hope you found the answers that you needed

Thanks for the answers so far. Ive asks everyone that treats my son but its so rare there’s only a few cases in australia & my son is the only one in or area. It’s a form of throat cancer that’s incurrable & require surgery for the rest of his life. He’s a little fighter. Thanks for the well wishes. Xo

Definitely check out the surgeon Rach has suggested. I really hope all goes well xx

I’ve never heard of it before but wish you all the best. Perhaps try googling it to see if anything comes up.. there may be some online support groups if there’s none in your local area.

But what is that? Never heard if it

I’m curious to know how this got diagnosed?

I feel for u and hope u can find a nice support group. U deserve it