Neurofibromatosis Awareness Month: Jordan’s Story

I’d like to step away from the usual prattling of this blog to tell you a little bit about someone whose story you should know.  His name is Jordan Blazier, and he’s been diagnosed with Neurofibromatosis since the day of his first birthday.  He is now thirteen, and each year has been a gift.

May is neurofibromatosis awareness month, and I’d like to share Jordan’s story with you. 

I’ll leave the rest of the explanation to his mother’s article, where she details the experience of raising a child who has NF.  But I will tell you that the Blaziers have been some of our truest and most steadfast friends for several years now – they have inspired my wife and I to become better people, to become parents, to give ourselves away like they give themselves away for the good of others.  Jordan’s story – and his family’s – is a testimony to the true potential of the human spirit, and it is not to be read lightly.

I can’t tell you how much I encourage you to read the story and share it with others.  The goal of the NF awareness campaign is to help the over 100,000 families in the United States that suffer from this condition get into a community together.  If your words reach just one family who is suffering from this and gets them connected to a community of people that can function as a pillar of strength, you’ve done more to help keep the patients and their families strong than you can ever imagine.

Click below to read something inspiring.

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    • I’m glad you found your way to this post and to Jordan’s story. I encourage you to join their community if you think that you and your family are ready. My thoughts and prayers go out to you and your son.

    • Your son will stay in our prayers. I encourage you to register for him at nfregistry.org. also, if you’re interested & willing to talk about your sons NF diagnosis I would love to connect with you.
      Jenn Blazier

  1. Thank you for sharing our story to help spread awareness about NF. It means the world to us. On another note, thank you for the amazing comments about our family. We love the three of you more than I could ever express in words. Your friendship is something we cherish and have never found in another couple. You will ALWAYS be family to Joe. Love, Jenn, Stefan, and our amazing kids, Jordan & Natalie.

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