Beautifully peaceful, loving, happy, and easy going, these are all words I would use to describe my daughter Jordan Gagnon.
But here are some other less liked words, Terminal, GMO, patient #7, GAN. Those words I wish we could forget.
Jordan was diagnosed over three years ago with Giant Axonal Neuropathy (GAN). This currently is a terminal genetic condition that effects the nervous system, slowly cutting of every nerve in the body.
On August 2nd Christa messaged, “Hey Pastor Bob, have you ever heard of a prayer minute done on social media? I had this thought yesterday that I could orchestrate a specific day and time for those that were interested they could pray for Jordan and our miracle. Has something like this been done before?”
From our subsequent conversation Christa launched an event for Wednesday August 29th at 6:00pm.
We first knew there was something different about Jordan when she was about three years old. She would drag her toes, was clumsy and stomped around. Little did we know that all of that would lead to such a devastating diagnosis.
She is among seventy-five other kids worldwide who have this condition and in 2017 she was patient #7 to receive an experimental gene therapy treatment. She now is affectionately referred to as our little GMO. We prayed and prayed for her to receive this injection and it felt like we had won the lottery the morning I received the call saying she would be next. It was a long three months from that point but we were so hopeful!
Update On Jordan
I wanted to give everyone an eighteen month update so when I started writing this I went back and listened to my last update even six months ago and to be really brutally honest with you this disease sucks!!
The changes are slow and gradual and come so frequently that even I forget what it was like eighteen months ago. But eighteen months ago we had a daughter that could still go up the stairs, could take a few steps without her walker and was otherwise pretty healthy.
Today Jordan has severe scoliosis, is unable to take more than a couple steps with her walker and is almost completely wheelchair bound. Things have changed a lot for us and what it looks like now to get around or the state of our house.
But one thing has not changed and that’s the outlook that Jordan has and how contagious it is. The doctors are still hopeful that the gene therapy is at least helping to hold off the progression of GAN. Personally I’m not sure that this dose or application was the exact match for a cure, I am still thankful she received it and I am still hopeful there is something else coming.
The other night while saying bed time prayers my four year old said “I sure hope Jordan can walk one day again” to which I replied “Well, we have to pray for healing in Jordan” to which Jameson looked at me and said “No Mom, we pray for Jordan to get the power! Jesus will send her the power.” I said okay then we pray for the power!
So this Wednesday we ask everyone to collectively have ONE minute at 6pm dedicated to praying for the power for Jordan, for her cure, that she will one day walk up on the podium at church and declare her testimony!
We know that GAN does not have Jordan, God has Jordan so as things get more difficult we lean into him and his promises.
August 29th. Sixty seconds. A lot can happen in sixty seconds.
Related Posts About Jordan
APPLICATION: Please leave an encouraging comment for Jordan and her family below. Thank you.
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