The funny thing about hope

You would think that a family like ours who has been given a diagnosis of a terminal illness with no treatment or cure would cling to any and all ideas of hope.  And trust me when I say we do.  But let’s back up a step.  On June 10, 2015, our world changed forever.  When we were given the diagnosis of Juvenile Batten disease we were told there was no treatment or cure for this disease. We were told what symptoms to expect and how the disease normally progresses. We left with a 6 month follow up appointment to track symptoms and that was pretty much it.

Thirty days later we were on a plane to Chicago to attend the annual Batten Disease conference.  Again, we went in with hope. We spent countless hours listening to doctors, researchers, scientists and other parents searching for answers, looking for  hope.  We found a commonality among everyone who attended.  They all had children who were slowly slipping away from them.  We were all there for the same purpose.  We want to save our children.  I remember sitting in a session with all the researchers anxiously awaiting for them to talk about CLN3 ( the version of Batten disease that Nathan has).  They went through all the research and upcoming trials for different versions of Batten.  Finally in what seemes like the last 10 minutes they talked about CLN3.  I don’t remember all they said, but left feeling like there was not any hope.  I remember leaving the conference so excited about the connections I had made with other families, but still felt there was no hope for Nathan in the future.

Fast forward a year to July, 2016.  We were now attending the conference in St. Louis.  Again, we were in a room with researchers and we waited until the end to hear about CLN3.  This time it turns out there is hope.  There is some promissing research in the mice model showing that it could potentially stop the progression of this disease.  However, that is really all we know.  It is currently under review with the FDA and hoping to have it fast tracked.  That means it could be available as soon as six months.  That is amazing news to think that there MAY be hope.  The problem is that it is up to principal investigators to determine who will be involved in this trial.  We do not know what the criteria is.  Do they want participants that are in the early stages, later stages, a certain age or a certain progression of the disease?  We have no idea.  We left the conference with this amazing feeling that we might be on the brink of something life changing for Nathan.  However, the more time that has gone by, the more we have thought about it.  What happens if he is not accepted into the trial?  There is a carrot dangling in front of us and we want it so bad, all of these parents do.  How does anyone possibly decide who gets it and who doesn’t?  Again, WE ALL WANT TO SAVE OUR CHILDREN!  We have been at the lowest of lows and have some indication that something great may be coming, but I am afraid to have hope. I am afraid to allow myself to feel that out of the utter despair that may follow if Nathan doesn’t get in.  I think that would absolutely devastate us all over again.

So this is where truly the hardest part comes in, one that I admittedly am not good with, Trust!  I like to have control over situations, to know that I can do something.  I have to allow myself to trust that there is a bigger picture, one that we may never even know.  I know that Nathan’s life has such a purpose and that God is the author of his story, not me.  It has already been written, we are just the ones reading along.

Pray for our family, that we are able to continue to look forward to a future of hope!

Stacey

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5 responses to “The funny thing about hope

  1. Praying for the future of hope for Nathan and all of you. I have certainly noticed more awareness of Batten in the last few months so that is hopeful. We have had several news items on the Dallas tv stations about this new research from the FDA, that is hopeful. And always the prayers going up for Nathan are a sign of hope. We love you all and will keep hope in our hearts.

  2. Praying for Nathsn and your whole family. Praying that he gets to do this trial. Always thinking of your family and what you are going through 🙏

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