• My son Maxwell is 14 and, in a wheelchair, full time. We have made it a point to make it to the gym at least 3 times a week this year. We were doing well last year, but he had surgery and then I had surgery and we weren’t able to finish the year strong. However, this year we are trying to focus more on a healthy lifestyle.

    Getting to the gym is…[Read more]

  • For my son Maxwell, I have made sure that our lights are connected to Google Home, so (as long as it’s not a power outage) he can get the lights back on quickly with his voice. I have also added emergency plugin lights around the house, so they will kick on if there is a power outage. They double as nightlights as well. Not sure if any of this…[Read more]

  • Jarrod Guth changed their profile picture 3 years, 2 months ago

  • Jarrod Guth posted a new activity comment 3 years, 6 months ago

    Hi Frankie, thanks for allowing me on the forum. I’ve done some looking around today and already found some helpful advice for my son.

  • Jarrod Guth posted a new activity comment 3 years, 6 months ago

    Maxwell is 10 Years old. We live in Kansas but have started going to CHOP every 6 months to see Dr. Lynch and be a part of a study. Maxwell this year started using his wheelchair more and more. I take him to the gym 3 times a week and we try to keep his muscles working. We have also started doing a yoga class together on Saturday mornings. He has…[Read more]

    • Sounds like you are a great support and you two are doing everything I’d think of recommending. I was diagnosed when I was 10. Maybe I’ll see you guys at the CHOP symposium in Philly. If you guys ever make it down to Louisiana, please let me know! Enjoy browsing the forum and reach out to me anytime.

  • Jarrod Guth posted a new activity comment 3 years, 6 months ago

    Thank you for the add Matthew. I hope to be a voice and an ear on this forum. My son Maxwell was diagnosed a couple years back and I am trying to help in any way that I can.

    • Glad to have you man. How old is Maxwell? If either of you ever need anything, please reach out!

      • Maxwell is 10 Years old. We live in Kansas but have started going to CHOP every 6 months to see Dr. Lynch and be a part of a study. Maxwell this year started using his wheelchair more and more. I take him to the gym 3 times a week and we try to keep his muscles working. We have also started doing a yoga class together on Saturday mornings. He has…[Read more]

        • Sounds like you are a great support and you two are doing everything I’d think of recommending. I was diagnosed when I was 10. Maybe I’ll see you guys at the CHOP symposium in Philly. If you guys ever make it down to Louisiana, please let me know! Enjoy browsing the forum and reach out to me anytime.

  • Jarrod Guth became a registered member 3 years, 6 months ago

    • Hey Jarrod, thanks for signing up!
      Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. Y…[Read more]

      • Thank you for the add Matthew. I hope to be a voice and an ear on this forum. My son Maxwell was diagnosed a couple years back and I am trying to help in any way that I can.

        • Glad to have you man. How old is Maxwell? If either of you ever need anything, please reach out!

          • Maxwell is 10 Years old. We live in Kansas but have started going to CHOP every 6 months to see Dr. Lynch and be a part of a study. Maxwell this year started using his wheelchair more and more. I take him to the gym 3 times a week and we try to keep his muscles working. We have also started doing a yoga class together on Saturday mornings. He has…[Read more]

            • Sounds like you are a great support and you two are doing everything I’d think of recommending. I was diagnosed when I was 10. Maybe I’ll see you guys at the CHOP symposium in Philly. If you guys ever make it down to Louisiana, please let me know! Enjoy browsing the forum and reach out to me anytime.

    • Hi Jerrod! Thank you for signing up and welcome to the FA forum!

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