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Rare Disease Day!

We love & miss you, our Sweet Super Hero!!!



Written by my dear friend, Nancy Reimer.  Thanks, Nancy!!

As I sit here wearing my pink shirt, pink socks and pink shoes to support anti-bullying day, I have to wonder, does it really make a difference.  This morning I woke up and regardless of us all in our pink shirts, still refereed the same morning fights between the kids that I always do.  We witnessed another girl smacking her brother on the way to school regardless of the pink shirts that they both wore.  I think that although it might not make an immediate impact to bullying, in time we will see the message received.  I think wearing a shirt or supporting a cause makes us feel like we are doing something...doing our part to make a difference to something that has become a problem.  I couldn't help but smile as I saw the kids this morning opening their jackets and comparing their pink shirts.  I guess only time will tell the impact of anti-bullying day.  I hope it makes a difference and that in time we will learn to accept others the way they are and not pick them apart for not being a carbon copy of who their peers think they should be.  I always support any effort in bringing about change to something that has become a huge problem in our schools and communities.

The green shirt is near and dear to my heart.  Tomorrow is Rare Disease Day and so another specific shirt day for me tomorrow.  The green shirt has become my running companion and my way of trying to do my part to spread awareness about a rare disease, Neuromyelitis Optica (NMO) that entered my life and my home when Riley, now 8 years old, was diagnosed towards the end of 2011 with this disease.  I cannot explain in words what it has felt like at times to attempt to come to terms with this diagnosis and I honestly don't know that I ever fully will.  When we hold our baby for the first time, we never think that something like this will ever happen to our child and when something like a diagnosis comes completely out of the blue and without warning, it turns your world upside down.  After months of fighting against NMO, I realized that I shouldn't be fighting against the disease, I should be fighting for it.  It was then that I ordered my first green shirt and ran a Half Marathon in June 2012 wearing it for the first time.  That green shirt has covered a lot of kilometres and it has given me incredible opportunities to talk to people about NMO.  Sometimes that green shirt is joined by another green shirt worn by my 11 year old daughter, Myah.  She amazes me time and time again with her incredible drive and determination to run by my side and make our message of awareness double.  Although she may fight with her brother (a lot sometimes), I am so proud that she is also willing to fight for her brother in helping to spread awareness by running with me and through her recent presentation about Neuromyelitis Optica at her school.

So does a shirt make a difference?  In my life it has.  Today I show my support by wearing pink and taking a public stand against bullying.  Tomorrow I will put on a shirt that I have pulled over my head many times now and I will take my place in the fight for NMO.  My fight has long ago expanded out of my own home.  I have 50 people as friends on my facebook page that either live with NMO themselves or who are Caregivers or family members to someone with NMO. There are many, many more from support groups I belong to as well.  Each person is so different and yet we were brought together by a common disease and have learned to rely on each other, support each other, share tears and laughter, and band together to fight for NMO.  We have mourned the loss of some precious members of that family together and realized once again the seriousness of the disease we battle. The progress in the last 5 years (thanks to the Guthy-Jackson Foundation) has been incredible.  I have to believe we are making a difference.  Is it because I put on a green shirt?  I don't know what kind of an impact it actually makes, but for me, I feel like however small of a contribution it may be to the world of NMO, that it is something.  So to my precious NMO Family...as I proudly pull that green shirt over my head tomorrow, know that it is my symbol, my message to my community that I am fighting for my son and for each one of you.  You continue to be my reasons...you are in my steps and my heart and you will continue to be long after there is a cure found for Neuromyelitis Optica...y'all are stuck with me. Your love and support drives me on those days where I don't think I can take another step towards the finish line.  It is no longer my victory when I cross the finish line...it belongs to all of us who daily fight and will most certainly conquer NMO.  To those who continue to walk this journey with us...thank you...your presence has made a huge impact.  If you want to show your support for Neuromyelitis Optica (NMO) on Rare Disease Day tomorrow, please wear green and join the fight!!!

 ALONE WE ARE RARE...TOGETHER WE ARE STRONG!!!!!!