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A father’s perspective: Our journey to finding a treatment

When Quinn, our soon-to-be-born daughter, didn’t make as much movement in the womb as our other 3 children, my wife, Annie, and I thought we had the “chillest” baby in the world. We joked that she was saving up all her energy for when she entered this world kicking and screaming. Quinn was born in August 2018, and she was the most beautiful little girl. Over the first few months, nothing seemed out of the ordinary. In fact, she appeared healthy and had strong upper body strength. But by the time Quinn’s 9-month check-up came around in June, her physical condition started to change.

This topic has 14 replies, 7 voices, and was last updated 8 months, 1 week ago by DeAnn R.

  • Author
    • #14080
      Kevin Schaefer

      Hey everyone, hope everyone has had a great week. I just wanted to say hello, and to welcome those of you who are new to the forums. Thanks for joining us here, and I hope you’ll find the community here to be supportive and helpful in your SMA journey.

      As a way to get to know all of you, please consider answering some of these questions. Also if you have any questions of your own or feedback, please feel free to post.

      -What brought you to the forums? Are you an SMA patient or caregiver?

      -What topics are you interested in discussing or learning more about?

      -Are you new to the SMA News Today community or have you been a part of it for a while?

      -Are you involved in any other SMA communities or advocacy groups?

      Feel free to tell anything else about your story that you’re comfortable sharing. Thank you.

    • #17222
      Jason Raposo

      Hello everyone, My name is Jason and I have SMA type 3.  I currently work part time in sales, I really enjoy what I do.  I try to be as active as possible in life.  I find with living with SMA your mindset is really important in terms of how to manage your progression.  If you want to Chat or have any questions feel free to message or add me as a friend.  Cheers!


      • #17223
        Kevin Schaefer

        Hey Jason, welcome! Thanks for introducing yourself.

        What kind of sales do you do? I have some friends in that industry. I work full-time here at BioNews Services (which is the parent company that owns this site), and my background is in writing and journalism.

        Glad to have you here, and feel free to jump in on any of the conversations here. And yeah, I totally agree that a good mindset is key not just to life with SMA, but life in general.

      • #17230
        Ryan Berhar

        Hey Jason, welcome! I’m Ryan, one of the moderators. Thanks for joining us.

    • #17368
      Nicole Padayachee

      Hey Everyone,


      My name is Nicole, and I have type II. I was diagnosed on my second birthday… I’m currently 16, turning 17 in 20 Days!!! I live in South Africa, Durban to be more specific. I’m in my final year of school, hoping to study Law at a tertiary level next year. I’ve been reading on this website for quite a while, but I’m new to the forums. I love being asked questions, especially ones that will help broaden your understanding of SMA.


      (sorry in advance if I have spelling or grammatical errors)

      • #17377
        DeAnn R

        Welcome Nicole!  Great to have you here.  How exciting to be finishing up school and looking at studying law.  Please feel free to share your experiences.  These forums are a great resource and we love hearing all perspectives.  Happy early Birthday!

      • #17381
        Kevin Schaefer

        Hey Nicole! Thanks for introducing yourself.

        I’m 25 and also type 2. I majored in English in college, and I now work full-time for this site’s parent company BioNews Services. Feel free to ask me any questions.

        Congrats on almost being done with school and happy early birthday!

      • #17397
        Ryan Berhar


    • #18403
      Tracy Odell

      I’m Tracy and I’m new to this forum. I live in Toronto, Ontario, Canada. I have SMA Type II as does my sister. I have just turned 61, and sist is 65 now. We were originally predicted to live to 12 only, then 18, then 30 before doctors quit trying to predict our life span. We both lived in an institution for kids with physical disabilities. I was there from age 7 until I signed myself out at age 18. My sister was admitted the same year as me (1965) but she was 11, so I was institutionalized longer.

      At the time I left, we were starting to see supports services in the community for people with disabilities to live independently with supports. It meant that I could live by myself but have physical assistance paid for by the government. Because of this, I was able to go to university, begin my career, and work full time until I retired at the age of 60.

      I am now married 30+ years. My husband and I have 2 grown daughters and a granddaughter who will be a teenager before too long.

      I volunteer with a number of organizations. Citizens with Disabilities – Ontario (CWDO) advocates and educates around making society and systems more accessible for us. PACE Independent Living provides support services to people with physical disabilities, head injuries, and disabilities like Parkinson’s to live their life in the community. I’m also active in my local church and on an advisory committee with the Council of Canadians with Disabilities (CCD) to address transportation – whether it be trains, planes, interprovincial buses or ferries. And for the first time this year, I served as a juror to select films for the ReelAbilities Film Festival in Toronto!

      I consider myself a “living fossil” with regard to societal changes which have helped people with disabilities move forward. I’m looking forward to reading conversations about other people’s experiences and to chime in about mind wherever appropriate, and I hope, helpful.

      • #18406
        DeAnn R

        Welcome Tracy, and all the newbies to the forum. I think you’ll find it’s a great community to be a part of.

      • #18409
        Kevin Schaefer

        Thanks for sharing Tracy! That’s really interesting about your advocacy work, and the resources you had in your young adult life. I have a goal to start an independent living space for people with disabilities, which I’ve posted about here before. I’ll definitely keep in touch with you.

        Thanks for joining us! Like DeAnn said, I think you’ll find this to be a supportive community.

      • #18434
        Ryan Berhar

        Hey Tracy! Thanks for sharing part of your story. Again, welcome aboard.

    • #20662
      Andres Ceballos

      Hi everybody how are you,

      My name is Andres, I live in Colombia, I have SMA 3, sorry for my English, I speak Spanish, I am pleased to meet you and talk about the sma, I would like to learn English to interact more with you, greetings

      • #20664
        Ryan Berhar

        Hey Andres, welcome! I’m Ryan, one of the forum moderators. Please let me know if you have any questions. Thanks for joining us!

      • #20665
        DeAnn R

        Hola Andres! That’s all I know in Spanish. Welcome. Good to have you with us. If you don’t mind my asking, as type 3 do you still walk? Just curious. I find the range of abilities with SMA fascinating.

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