How our story began
This is how it all started, with a post to facebook, announcing how our lives had changed forever. We had been given a glimpse into the future, of what to expect and what we would be asked to face. So much has changed since then. So many treatments explored, so many appointments, so many tears. But what hasn't changed is the hope we still have and as a parent of a rare special needs kid, hope is like your life preserver.
"It is with heavy hearts that Pete and I must share some news. Jordan has recently been diagnosed with a rare degenerative terminal disorder called GAN (Giant Axonal Neuropathy). This means that her 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. Currently there is no cure or treatment. Those are the facts however our hope lies in a trial in the US where they have just started human trials. We should hear shortly if Jordan is accepted to the first part of the Trial.
I am sure you are wondering “why share this on Facebook?” The reason is that this is our new normal and I don’t want Jordan’s disorder or limitations to become the elephant in the room. I will be very public about our journey, there are less than 70 documented cases ever in the world that have had this rare disorder so as you can imagine there is very little help or information available. As you can imagine we are processing this information and trying to stay as positive as we can, maybe this really terrible diagnosis will lead to Jordan’s cure.
“For I know the plans I have for you” declares the Lord, “Plans to prosper you and not to harm you, plans to give you HOPE and a Future.” Jeremiah 29:11
With Love,
Peter and Christa"