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Stargardt's Disease

October 31, 2017

I have thought about writing this many times in the last couple of months, but for some reason I always talk myself out of it.  Many of you know what this is about, many of you don't.  For those of you who don't know, my son was diagnosed with a disease in June of this year called Stargardt's Disease.  We had never heard of it until June.  You may have heard of it as macular degeneration, which usually happens to "older" people.  He has macular degeneration and is nine.  

 

What does this mean?  It means that he will lose most or all of his central vision.  Luckily (and I can't tell you how lucky we felt when we found out), he will retain his peripheral vision.  If you know Brodie, you know that he is an excellent biker, a crazy scooter rider, a builder of paper contraptions, a parkour fanatic and a sweet little guy.  You would look at everything he does and would not believe he is at this point and meets the legal definition of blindness.  A year ago, he was seeing 20/80.  Currently his vision is at 20/240 (legal definition of blindness).  This is a progressive disease and he progressed quickly.  We don't know when or where it will stop.

 

We started this journey a couple of years ago.  Brodie went to vision therapy for two years, which helped fix a lot of his vision issues, but there has always been parts of it that we just couldn't fix.  Until May of this year, nothing showed up on scans.  That changed when we went in to a couple of doctors and they observed "flecks" covering his retina.  These flecks are Vitamin A, which his body cannot get rid of and causes the vision loss.  He has had this since birth, but since those flecks didn't make their appearance, we didn't know.  

 

 We  patiently await genetic testing to confirm that he has the gene for Stargardt's, which does not necessarily change his diagnosis (you can have Stargardt's  and not have the gene that commonly causes it), but may make it easier for him to get into some trials down the road. 

 

Right now, school is a tremendous struggle for him.  Socially he is trying to figure things out.  It feels like everything is different.  We are working with many people, teachers and agencies for support.  I have never been so thankful than this year for an amazing special education and general teacher.  They are fantastic.

 

Our initial diagnosis was for Brodie to be completely blind.  This was by far the hardest thing my husband and I have ever been through.  Weeks of not sleeping and not eating for us, until we heard that he would retain part of his vision.  Relief, thankful for any vision he will keep.  

 

This is a long journey we have started with Brodie and are supporting him however we can.  We have told him from day one that he can be anything he wants to be in life.  Having an engineer for a father, Brodie is so lucky to have someone that dedicates every extra second to helping him learn. 

 

In the last couple of months, Brodie has emerged.  He has become an artist and an engineer.  Constantly trying to figure out how things are put together and how he can reproduce them himself.  Because he is losing part of his senses (vision), other parts are getting stronger and emerging.  Part of me is so thankful to see this side of him.  I know we will adjust, I know he will be fine eventually, I know we will always love this little guy like nothing we've ever felt.  I just hope that he will be okay and I don't have to worry every day if he is that. 

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October 31, 2017

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