A Rare Perspective

Looks of worry, fear, piercing eyes of despair.

I recognize those eyes, those feelings. I see those same eyes looking back at me in the mirror; looking back at me though my husband’s eyes and my children’s sometimes too. The look knocks the wind out of me.  You see, I had the amazing opportunity to speak to a group of newly diagnosed families  whose children are affected with Batten disease this week. They are a part of very rare and unique club, a club nobody wants to be a part of.  We were brought together by a genetic condition that most have never heard of before.  A condition that threatens to take the most precious in our entire lives, our children.  Their tears and grief take me back to BB.

 

I often try very hard not to think about life BB – (Before Batten).  We were just a young family juggling three young boys; Wayne would go off to work each day and I was a stay at home Mom.  Wayne had a lot less gray hair 🙂 and I lived in a world of little boys, baking cookies and workouts!  We spent our days at the park, preschool, gym classes and volunteer activities.  It was a perfect life. We had no idea of how blessed we were.  Life was simple before the freight train that is Batten disease hit our home and shattered the life we had planned for our family.

That train crashed on June 24, 2009 and our life changed forever.  A diagnosis of juvenile Batten disease.  A fatal, degenerative brain disease that was already working on taking my beautiful 6 year old Will, one cell at at time. Darkness and despair moved in and took over our lives.

Different than most diagnosis… that throw your life into a mode of hospital visits and options of treatments.  Batten disease comes in with a big name and huge bite, then sits and lingers in your every thought. At the time of our diagnosis, there was nothing. No treatment, no cure, and always fatal, our geneticist told us to go home, enjoy our child and watch him progressively get worse until a premature death in his late teens or early 20’s. Children that once ran and sang, become wheel-Chair bound then bedridden as this horrific disease steals their sight, mobility, speech and cognitive abilities.

This evil, dreadful condition kills a child, brain cell by brain cell.  It is slow and meticulous. Every slurred word, stumble, nap and seizure is a gentle reminder of the disease that lives in my child’s body and is working hard to take it over.

From the day we received Will’s death sentence, we chose HOPE.   With the recognition that if we did nothing, we would watch our beautiful, green-eyed boy, with the sandy blonde hair and biggest smile, die a slow and terrible death as his body and brain shutdown.  That was not an option.  The world needed the kindness and love of our Will, WE needed our Will and WE will figure out a way to SAVE him.

We did not know how we would change his fate, but I just knew we had to try. We called on God, friends and family.  From that day blistering hot day in June of 2009, we waged a war against this disease.  An epic War… not a battle. We have fought the Batten battle every single day for the last decade.  Some battles we win, some we don’t. But winning the War was all I care about. A treatment or cure to save Will.

Batten disease had picked the wrong child and the wrong family. I believe only evil could create a disease of this nature; and evil will not win.  A future of darkness and death for children full of light and life?  Not an option.

We launched an awareness and fundraising campaign in August of 2009 and support a research team at Texas Childrens Hospital that after nine years, has the most promising treatment in our disease’s history.  We have raised nearly $5.7 million in The Woodlands community… so I must revise that we have called on God, friends, family and the amazing and giving community of The Woodlands, Texas to help make positive change and Save our Will.

So, here I stand, nine years later.  Stronger than I ever thought I could be and more HOPEful than I ever imagined in my war against Batten disease.  I say, I, but I really mean WE, you see, God literally blessed me with an army to help me fight.  He gave me the courage to ask for help and he blessed us with angels on earth who believe in Hope and saving Will.  He forced me to take a hard look at how I was living and spending my days.   He humbled my thoughts, took my mind to focus on the service of others in addition to saving my Will and taught me to share that same mindset with sons.  I have been given the gift of time with Will.  A gift that so many other families don’t have. And Will?  Will has exceeded all of my expectations. At 15,  I pictured a sickly boy requiring caregiving and providing little impact on our world, and WOW was I wrong.  I have a strong, courageous and brave young man that inspires everyone around him with his positive attitude and love for all things breathing.  Will plays baseball, loves art and wants to be a Zookeeper.  He has dreams and aspirations, and most importantly? He believes in HOPE.

 

You see time, has given me perspective, it tends to do that doesn’t it?

As I look back to this week’s family conference; yes, I shared our story and the actions that have taken place since our diagnosis, the successes and how we got to where we are? But the most heartwarming message was being able to share true HOPE.  The fact that I could look in the eyes of the parents before me, wishing to fight for their children, and I, with the greatest amount of confidence could tell them to believe in HOPE. That in the deepest depths of my heart and the most rationale part of my brain, I believe that God has put us on a journey that will be victorious.  That God’s plan to is save our Children. It won’t be without hard work, sacrifice, heartache, anxiety and a lifetime of faith; but in the end light and love will prevail.

At some point every illness was deemed incurable, until a thoughtful group of determined people vowed to make change.  We will Save Will and all the children affected with this disease. Be a part of our life saving mission for Batten or help a friend with another Rare disease. Every action makes a difference, you just have to make the decision to do something.