November 1, 2014

November 1, 2014 is now knows as dooms day in our house. This was the day we first saw the signs of Vanishing White Matter.  This was when our lives changed forever.  What seemed like a normal day, I actually took Reed to Club Volleyball Tryouts so that he could run around the gym.  As we walked into the gym my dad and I noticed some abnormalities in Reed's walking but he seemed find otherwise.  If I remember right I think he had some new shoes on also so maybe I chalked it up to that.  My mom came up a few hours later to pick him up and noticed the same thing, she took him back to there place to put him down for a nap.  From there is where our living nightmare took over. When I got to my parents house to pick him up he was still sleeping so I woke him up and set him down to be on his way, it was from that point that his walking took a drastic change, his right foot turning in, falling ever few steps. Trying to remember did he fall at the gym, did he complain about anything.  A call to Jesse to come over and take a look at him and then a call to Urgent Care had us going in for x-rays and blood test.  It would be another 4 months before we got an answer.  

Vanishing White Matter has taken so much from us, we live in fear many days, fears of a cold, fears of a fever, fears of whats to come.  They say average life expectancy for Vanishing White Matter is 5-10 years from onset of symptoms so that means today we head into year three of onset (to be raw here typing that and the realization of what that could mean started the tears).  But Vanishing White Matter has also taught us so much as well.  We would trade an infinite amount of things to not know what Vanishing White Matter is.  But it has brought us closer together, it has taught us to appreciate every second, minute, day.   Reed has taught us to smile more, live in the moment and to have HOPE and never give up.  He has taught us how to fight for something and to truly believe in any possibility.  

Here is to FINDING A CURE IN FOR VANISHING WHITE MATTER in 2017!!!

Pray

Days after November 1st when doctors thought it was just a crack in the knee, at the time we didn't know better but we should have asked for another x-ray to be done. He never regained the ability to fully walk after the cast came off.