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2809RE: [Myotubular_Myopathy] (unknown)

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  • angela huss
    Mar 5, 2006
      Dear Agnes,
      Hello! My son had MTM, a g-tube, vent/trached and a nissen. He had acid reflux really bad. A Nissen is a surgery procedure that involves the stomach being tied off enough that a child can't breathe in food or drink. (Asperate it) There is a website that I really like its: www.tracheostomy.com imformative website for parents and children dealing with tracheostomies and care of a trach. You may even put your children and there story on it. Best of luck! Sincerely, Angie

      Agnes Vajda <bondargika@...> wrote:
      Hello Anne!
      It is a good idea. I will ask for it by the doctors. I think the matter (trouble) is our insurance-system.
      Thank for your answer:

      Anne McAuliffe <anne@...> wrote:
      Dear Agnes
      We are in the UK, and as in Switzerland all our equipment and supplies are paid for, as well as nursing care at home.  As Hungary is part of the EU I wonder if you have any way of arguing that Ben's human rights are being violated by not being provided with the level of care elsewhere in the EU?
      The very best of luck, this is hard enough without state help
      Best wishes

      From: Myotubular_Myopathy@yahoogroups.com [mailto:Myotubular_Myopathy@yahoogroups.com] On Behalf Of nadine schwendimann
      Sent: 04 March 2006 19:44
      To: Myotubular_Myopathy@yahoogroups.com
      Subject: RE: [Myotubular_Myopathy] (unknown)

      Hello Agnes
      We are parents of Mael (9 month) and we are living in Switzerland. - Here in Switzerland the insurance have to pay everything - machine and nursery (14 hours a day)...
      We had to learn all the thing about the caring of a tracheostomy and a g-tube and since october 05 we have our boy home....
      I'm very sad to read that you have to look yourself about a ventilator... and I hope you'll find someone here, who can help you!
      If there's something I can do to help - let me know... sadly we are not able to do money-support but maybe we can inform you about our vent (it costs about 18'000 Swiss-Franks) or inform us about possibilities to help you (trusts or something)! (if you're interestet: mael has a homepage... but it is all in german: www.mael.ch.vu)
      Let us know how you and your son are doing!

      Agnes Vajda <bondargika@...> schrieb:
      Hi Everyone!
      I'm Agnes from Hungary having a son, Ben (6 months). Ben has x-linked mtm. He is still in hospital, needs 24hrs vent. The doctors say if we want to bring him home we have to buy a ventilator and manage the home care. It is a very rare and expensive thing here in Hungary.
      Please, write me, how did you do it? How works it in your coutries?
      Thanks very much
      Ben & his parents
      Could anyone explain (write) me what NISSEN mean. I don"t find this word in the dictionary

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