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Time Is Motor Neurons

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 4 replies, 4 voices, and was last updated 2 months, 3 weeks ago by Patrick Lenihan.

  • Author
    • #22521
      Kevin Schaefer

      Hey everyone! Hope you all had a great weekend.

      For today’s motivational post, I wanted to talk about maintaining long-distance friendships and relationships. Though I’m fortunate to still have plenty of friends in my home town, I also have many who have moved. Especially since college, I know a lot of people who now live in other states. Plus, out of all my friends I’ve met at SMA conferences, only a few live near me.

      I have several long-distance friends who I text and call pretty regularly, and I’m glad I keep in touch with these people. It’s especially helpful for me to have people in the SMA community who I can talk to on a regular basis.

      Do you have any long-distance relationships? How do you keep in touch?

    • #22531
      DeAnn R

      Most of my good friends don’t live nearby.  It’s difficult because I don’t travel, and they generally don’t either.  We do make a point to text and call.  We do get together occasionally.  One benefit to technology and social media is being able to stay connected.

    • #22544
      Halsey Blocher

      I also have several long distance friendships. My best friend lives in TX, and I have several other good friends in other states. Texting and Facebook are so important for maintaining these friendships. I guess I could always write letters (and do sometimes) but technology makes things so much easier. Of course, in person visits are always the best, but having easy ways to communicate is way better than nothing!

    • #22546
      Alyssa Silva

      I do as well. I’ve met some people online and have developed friendships with them. I always thought that was a little strange to me— to befriend people you’ve never met— but living in the digital world makes it incredibly easy. I’m better for these people.

      My best friend since kindergarten also moved away a couple of years ago so we do the long-distance thing too. It’s hard at times, just because she’s my person. But we make it work with lots of texting. And the times we do get to see each other are that much sweeter. We actually just exchanged Christmas gifts over the weekend haha.

    • #22551
      Patrick Lenihan

      My entire family and some of my closest friends live on the east coast and I live thousands of miles away on the west coast. I use phone calls, messaging and Facebook to keep in touch with them.

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