PMD Family Support
PMD Family Support
  • What is PMD?
    • Pelizaeus-Merzbacher Disease (PMD)
    • PMD vs SPG2 and PMLD
  • Newly Diagnosed?
  • Living with PMD
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    • 2025 Conference Registration
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    • 2015 Annual Conference
    • 2014 Annual Conference
    • We Attend Because...
    • More Past Conference Photos
  • Family Stories
  • Our Angels
  • Cruise For The Cause
    • 2018 Cruise
  • Fundraisers & Donations
  • Daviau Family Story
  • Research
    • Participate
    • FAQs
  • Links & Downloads
  • What is PMD?
    • Pelizaeus-Merzbacher Disease (PMD)
    • PMD vs SPG2 and PMLD
  • Newly Diagnosed?
  • Living with PMD
  • Annual Conference
    • 2025 Conference Registration
    • 2025 Annual Conference
    • 2022 Annual Conference
    • 2020 & 2021 Annual Conference
    • 2019 Annual Conference
    • 2018 Annual Conference
    • 2017 Annual Conference
    • 2016 Annual Conference
    • 2015 Annual Conference
    • 2014 Annual Conference
    • We Attend Because...
    • More Past Conference Photos
  • Family Stories
  • Our Angels
  • Cruise For The Cause
    • 2018 Cruise
  • Fundraisers & Donations
  • Daviau Family Story
  • Research
    • Participate
    • FAQs
  • Links & Downloads
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Gedert​ Family

Our story, as of 2015... Fred is now 33 yrs. old, he lives in a home with his girlfriend who is CP and Downs she also had a stroke at a very young age so is non-verbal (like him) and both are in wheel chairs. They live with a full time caregiver.  In my free time (for 6 yrs.) I have been intent on looking for my other son that I gave up for adoption in 1969.  When I found the PMD family Patti urged me to look for my other son, I did try but it was in the days before home PC's and therefore I got no where.  So 6 yrs. ago I decided I had the time and really wanted to find him, long story short I found him 3 yrs. ago and yes he also has PMD  but was diagnosed as CP all of his life.  He has had a great life and is verbal, I met with him at Christmas 3 yrs. ago, we continue to skype and I go to see him twice a year.  He is now almost 46 (April 27th). His name is Justin and he and Fred look very much like brothers. Justin has less in the fine motor skills but does feed himself.  
Fred has some fine motor skills but refuses to feed himself, both are on regular diets and eat anything put in front of them. 

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My feelings with Fred have stemmed from when he was very little and crawled around on the floor at Christmas time and my theory is he bit a Christmas light on the tree and got a little shock as from that time on he refused to put anything in his mouth except his bottle and an old rubber elephant he used to chew on, that was it. We worked on self feeding for years in school but he just shook and refused so we feed him, he is also very fussy about who he will let feed him.  If he doesn't like someone he refuses to eat. Sometimes it can be a big problem, especially when he was in school, but this is no longer a problem for us.  Justin lives with his Adoptive Mom and goes to a work program.  They have been looking into PMD, but she doesn't go on Facebook so it makes it harder to communicate with her. Both guys are very healthy and seem to be doing very well.  So this is our story.  I pray every night for their continued health and happiness.

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About Us
Contact Us
PMD Family Support Est. 1990
525 S. Harris Ave.
Indianapolis, IN 46222