Phelan-McDermid syndrome - Hope for 22q13 Gala

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  • Опубликовано: 29 окт 2024

Комментарии • 3

  • @kristineill2378
    @kristineill2378 2 года назад +1

    I can't stand when I see or hear Phelan lucky with Phelan -Mcdermid syndrome. This syndrome stole my son from me. I don't sugar coat anything. I love my adult son but he will forever be a baby. I don't understand anything about this disease. He had no developmental delays and hit every milestone on time even said a few words. He has regressed and is profound with this syndrome. I will say he is good natured and is not aggressive at all. I have the constant worry of his fate when I die because all extended "family" has abandoned us. Honestly when someone tells me I'm blessed I want to scream because it is surely a curse in our case. F#@% this syndrome.

    • @chadnewby8005
      @chadnewby8005 2 года назад +2

      😥 pray pray pray. Sending you hugs and loves.
      Chloe is 18 now. We are blessed with a forever baby. You and I wear the same boots. Don’t worry about what everybody thinks including family. God has a plan ♥️
      Drop the heavy body armor pick up the sword and fight for love for your son

    • @chadnewby8005
      @chadnewby8005 2 года назад +1

      Our kids are perfect the way they are. :)