35 Answers

My first born was born with laryngeal papillamotosis. He speech and breathing isn’t the best and he has undergone nearly 30 surgeries from the age of 18 months till now 7years old. I’m just wondering if there’s any parents or support groups for families with people with this condition?? And is there any hope for my son to have a normal voice?? Any answers would be appreciated.

Posted by anon, 8/8/13

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  • 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

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