Podden med Maja och Nina i Sjukt Liv – Ut med nyheterna

Båda kvinnorna Maja och Nina har en varsin son som lever med den svåra muskelsjukdomen Spinal muskelatrofi (SMA 1). De talar från sin vardag, och båda kvinnorna har att möta sina djupaste rädslor genom sina barns sjukdom.
Lyssna gärna på Maja och Nina, prenumerera på podd här i iTunes -jag följer redan

Roy mäste leva

#Spinraza #SMA #LeverMedSpinalMuskelAtrofi #Ett liv på randen och igen med fötterna på jorden

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  1. Dom säger att han är sjuk

Publicerat den: 26 Okt, 2018
Uppdaterad den: 06/11/2018

Tagged , , , , , , , , . Bookmark the permalink.
Liz Andersson

About Liz Andersson

Att besöka min andra bloggar Att leva med reumatoid artrit

19 Responses to Podden med Maja och Nina i Sjukt Liv – Ut med nyheterna

  1. Nils says:

    Skönt att Roy mår bättre 🙌🙏🙂

  2. MiaMia says:

    Lyssnar på podcaster när du prenumererar på en podcast i Podcaster-appen i iOS eller Mac. Tack Liz, 🙂 jag ser fram emot en fortsatt dialog

  3. Tami says:

    Liz, Mia ihr könnt gerne übersetzen, sobald ihr die Zeit habt 🙂

  4. Tun wir Tami.. 😉

  5. Traudl says:

    Werde folgen 👍

  6. Sandy - SMA 2 says:

    Ich auch 🙂

  7. Nils says:

    We are lucky that our son has become stable. The fears are less a great
    burden falls on the shoulders. But at the same time you realize that are wonderful if you don’t transfer yours negative vibes to the child

    Even children feel the fears of their parents. Mia and I found a wonderful way how both of us can laugh in front of our kids, while inwardly the volcano spits 🌋 💞

  8. @Nils

    Sant ord, jag älskar dina vita ord. 👍 Jag tror att du växer med sjukdomen. Du blir manager av sjukdomen och kroppen. Jag skrev nyligen en dokumentationen i reumatologi om det.

  9. Fairy - SMA type I says:

    First of all I would like to thank Mia + Liz who made it possible for us not swedish folks to translate the podcast in swedish, english and german. I especially want to thank Liz for the subtitle she provided us , it was for me better to follow

    To the topic.
    I’m quite saying what Nils says. One can transfer his hysteria and fears to the child. My parents breaking a world, when I were diagnosed SMA type I many years ago. My parents have learned over the years, that they let me grow up as a normal child as much as possible. They even had a baby after me, my brother is healthy

    Despite my disability, I live in a self-determined life with assistants, intensive appliances in an apartment. I attended school and graduated from high school. I am training as typesetter in printing (book) press.

    I hope Nina, Maja will be able to give their children this life their children once. 🙂 You must not be too scared. You have to have courage for new ways. 🙂

    I found the podcast very, very interesting. I learned a lot again what others are going through. With Spinraza a better life begins for these two children, definitely 💪

    Thank you again to Liz who has created a loving family site in which we can talk about everything

  10. Peter says:

    Hej Nils
    Du lever helt enkelt det perfekta livet om ditt sjuka barn 👍

    Nina och Maja gjorde en cool diskussionspodd 👍👏

  11. Sofi says:

    Ett speciellt tack till Nina och Maja 🙌👍💕

  12. MiaMia says:

    ❣️ till Fairy

  13. Traudl says:

    👍👏

  14. Nya avsnitt av podden Sjukt Liv
    Ut med nyheterna

    ❤️Tack Nina och Maja för att du berättade om era barn
    Du hjälper många föräldrar till barn med en svår och långvarig sjukdom.

  15. Bente says:

    👍

  16. Traudl - Son with SMA I says:

    and again a big thank you to Nina, Maja for talking their stories 🙂 Liz for the translation in ours internal forum. My family, best friends reacted well, when we talked about our son having spinal muscular atrophy. When our son died at SMA for two years ago with 25 months. Family, best friends were there, they carried us on their hands. Best girlfriend is Liz, she is a great woman for me. She has a big warm heart and soul, thank you Liz for everything 💕 Love you

  17. A good friend stands always by side, even when you are had a bad times. I am proud, I was allowed to meet your little hero, even if the time was too short. He will always live in my heart. He will always touched you as a star. You know, every new star in the sky is a little SMA angel. 🌟 Thanks Traudl for your sweet feedback, I really appreciate it.. 😘

  18. Nils says:

    👍 till Nina & Maja, så fin 🙂

    Feedback av Liz på itunes Store

  19. Tack för att du delade Nils.

    Igår var jag inte säker, han hade skickat den över macappstore. Jag använder min MBP (MacbookPro)