Rare meaning not occurring very often; not found in large numbers; seldom found; 
Or the definition I prefer: “Distinctive, unusually good, remarkable or extreme of its kind.”
On this day, a day dedicated to those living and battling diseases that are rare, I prefer not to focus on the fatal condition that has plagued Will’s childhood and threatens to steal his future. Instead, I choose to highlight a beautiful “rare” soul who has taught us to love hard and believe big.  
This evening, I was given the gift of witnessing a beautiful moment. In the hustle and bustle of a full house of sports, activities, work, HOPE events and boys and dogs…I notice a moment and wished I was 1 minute quicker with my camera.  

Will got on the floor for his nightly “lovefest” with his dog Buster…who he realized was laying on the cold tile; Will, who is blind, went and found the dog bed and proceeded to lift Buster into the Bed, tuck his paws and pet him back to sleep. Will proceeded to lay with him, telling him what a good dog he is. My heart melted.  
Will loves hard and he loves big.  

I often think about how beautiful Will’s world is. Despite living in a world of darkness with a brain infiltrated with Batten disease… He has continued to share the most amazing heart I know I will ever witness… and possibly only surpassed by the love of his brothers, who have followed Will’s lead, by wholeheartedly, loving big.  
Will has always been surrounded by love, unconditional, big, huge LOVE. 
Nature vs Nurture, I can’t say… but the fact his strongest attributes happens to be two of the most important live-by qualities to me: to love and be kind, can’t be a coincidence … 
Ironically, I believe his blindness has a huge part in his positive outlook. Him not being able to see has shielded him from the dark hearts, sadness, and ingenuity that surrounds us on a daily basis. So much that is felt, but the majority is seen.  

Imagine a world like Will’s. No Internet, no social media, only chosen TV and Movies, surrounded by friends, teachers, therapists, and family members who adore him. His world always has blue skies, big white clouds and a beautiful sun shining down on him. His evenings always consist of the most stunning, star-filled nights with the white light of the moon.  

I truly believe his soul is at peace. He gives love and receives it back 100x. How awesome is that? Will knows when you aren’t authentic… he steps back, he knows when you don’t get him, and he walks away. He doesn’t care what you look like, what you have or who you are. He will only remember how he felt when he was with you… and if you are blessed enough to be a part of his inner circle, he will never let you go. He is fiercely loyal… he is good. He wakes up smiling and goes to bed eyes closed in faithful prayer. 

As I look back on yesterday, this final Thursday of February and the annual Rare Disease Day, I reflect on the major milestone Will hit this past month, his 16th Birthday. I think about the green-eyed little boy I birthed, and about all those hopes and dreams I had for my babies when they were young.. Dreams for them to grow up, play sports, be academic, learn to drive a car, attend dances and graduate and go to college … I am overwhelmed by the sad truth: Batten disease has stolen most of those milestones away from him and us. 
I grieve Will’s losses every single day and have since our path took a new direction of uncharted territory in June of 2009. It is life with a rare, degenerative condition, and we aren’t alone. Hundreds of Batten families suffer with the same debilitating reality that their child may not make it out of childhood.  
But we made a conscious decision to live a life of light for our family while focusing on the goodness and blessings that God shares with us through our sons and our community, all while embracing sickness amid hopes of health. 
I take a moment every evening to stare deep into the sightless, green eyes that look chilling like my own. I caress the face of the courageous young man my Will has become, as he battles against a disease raging inside of him. 

Will is actually so much more than I could have ever imagined. He has a beautiful innocence that is pure, he has taught us how to love and have purpose. He is a boy that is turning into a man before my eyes, who has taught us, no matter the circumstance, close our eyes and imagine a beautiful world focused on the Rare: the remarkable, distinctive and extreme-of-its kind moments that make life worth living.  
In honor of my rare boy, may God bless you in all you do. 


3 thoughts on “Rare Disease Day

  1. I woke up this morning to your beautiful words about Will and his beautiful way he sees life and lives his wife . Put a big smile on my face today

  2. I Do not believe I have ever met a kinder, loving soul as Missy, she gives her all to her familY, to raising funds for research and to her community. I knew of Will years ago as my daughter was Part of his learning in grade school. I have held him in my prayers evEr since even when we lived in Ohio. Now we are here & I Like your updates Missy & your beautifUl words. Will & your family remain in my prayers, HOPE aNd LOVE can carry you on tHe path.

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