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When five-year-old Jordan Gagnon and her mom Christa woke up they realized they weren’t in Kansas anymore.  An eleven month journey through uncharted health territory, culminated in a cross-continent trip to the National Institutes of Health Clinical Centre, in Bethesda, Maryland.

The NIH Care Centre is America’s largest hospital devoted entirely to clinical research.

Jordan is in Maryland to receive gene therapy to battle GAN.

How Precious Is One Life?

If you’ve never heard of GAN, you’re not alone. There are less than 70 documented cases of GAN  in the world.

Giant Axonal Neuropathy means that Jordan’s body doesn’t produce enough or any of a protein needed to attach to her axons telling her body to clean them up. Therefore they continue to grow in excess until they cut off all messages to the nerves. GAN is like ALS in children.

There is no known cure for GAN but that hasn’t stopped people from donating millions of dollars for research.

Jordan first traveled to Maryland in August and again now because of the generosity of Albertans – over $90,000 was donated through Now 102.3’s bottle drive ($10,000 of which was raised through North Pointe).

Jordan Gagnon cheque

Hannah and Jordan Together

Jordan benefited from the experimental treatment because of Hannah Sames and her battle with GAN – Hannah’s Hope

On July 21, 2016, eight years and $8 million fund-raised dollars after the Sames family of Rexford, NY, began their battle against GAN, their daughter Hannah finally received gene therapy.

Jordan received the same therapy.

Christa Gagnon says, “Thank you to all the volunteers and community that has rallied around Jordan and our family on this journey. You can see the updates at Jordan’s Journey for a cure. We know how amazing Jordan is but to hear how much she has touched the hearts of so many makes me a proud mamma! Thank you again from the bottom of our hearts.

Going to Paris

Jordan is a force to be reckoned with. She’s told her story on Global TV and on multiple print and digital platforms. Jordan has always dreamt of going to Paris and now she will. Read more here.

Jordan also launched her own line of affirmational sweatshirts.

Read more about Jordan and her family at Jordan’s Journey.

You can leave an encouraging comment or a prayer on Christa’s Facebook page or below. Every comment will be read. Thank you.

Hope grows here.  We share stories that inspire people, build faith, and offer lasting purpose.

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Bob Jones

Happily married to Jocelyn for 44 years. We have two adult sons, Cory and his wife Lynsey and their son Vincent and daughter Jayda; Jean Marc and his wife Angie and their three daughters, Quinn, Lena and Annora. I love inspiring people through communicating, blogging, and coaching. I enjoy writing, running, and reading. I'm a fan of the Double E, Bruins, Celtics, Red Sox and Pats. Follow me on Twitter @bobjones49ers


  • Shirley Bidnick says:

    You asked, ‘how precious is one life’? We all know one life is precious beyond words to God, family, church, friends who love, and neighbours and even strangers who take up the cause on behalf of a life. Precious can be a curly haired innocent little girl who wants to dance or a much older, more sin torn version of God’s Creation. One life is so precious that even in an overcrowded world where stories of human suffering fill daily newspapers everywhere, our hearts break when we see a photo of one child in a red polka dot dress hold up a coil notebook with her fearless message of hope, her new beginning, to end her suffering. We cheer, believe, pray, give thanks, collect bottles, and in addition to affirming how precious Jordan’s life is, we need to remind ourselves that each individual who cheers, believes, prays, says thanks, collects and gives is equally precious. Every empty line in that notebook represents a person who Jordan may not know personally but who she is depending on to trust God for the miracle she needs. Jordan reminds us that we are all in this together. That’s real precious. Thank you for holding Jordan’s story up for us. Thank God for blessing Jordan and her family. In Jesus’Name. Amen

  • bob jones says:

    Beautiful comment, Shirley! Jordan has concluded her week of tests and is headed back to Edmonton after making new friends and taking a step towards her future and health. Praying and believing for a miracle for her and the children trying this experimental treatment.

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