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
Jordan’s Journey For A Cure: Part 2
APPLICATION: Please leave an encouraging comment for Jordan and her family below. Thank you.
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Thank you for inviting us to pray. We will gladly do so! God bless you and your family.
I do not attend your church, but love it when I visit, I am sending this request on to my church prayer group for prayer for Jordan on Wednesday (and every other day) at 6.You are so right Jesus has the power!
Thank you for sharing the request and praying Maureen!
Count me in and thank you for sharing and giving us all an opportunity to be a part of Jordan’s journey. Blessings on her and all of your family as you persevere.
Thank you for giving me the opportunity to pray for this darling girl, Jordan.
Wednesday, Nov 29 . 1 minute.
Our father answers all prayer. I will be add Jordan to my prayer list. I will meet with you all on Wednesday to pray for Jordan! Praise God!!
It will be my privilege to pray for this precious little girl and her family. Thank you for allowing us to share in Jordan’s journey. Praise God from whom all blessings flow!
My niece sent me this information about the PRAYER MINUTE FOR JORDAN, and after reading the blog, it touched me deeply.
What a privilege to pray for this young girl. Jordan will continue to be in my prayers as God brings her to my mind.
God is in control and His timing is perfect.
She sounds like a little fighter and I pray she will see results from this prayer minute.
Thank you for commenting Mary Anne. Jordan is one of God’s astounding masterpieces. She is joy and life.
Beautifully written and spoken. Missed the minute but spent many now in prayer for your sweet soul Christa, and for Jordan’s healing miracle. ❤️