Thankful

Today is International MPS Awareness day!  It's a day we try to drive awareness, raise money, run races, and spread our messages about the impact of Mucopolysaccharidosis (MPS) on children, adults and families. We show you the real, raw details of how this effects our lives every day and how it takes our loved ones away. We ask you to wear purple to honor this day.

Really, is it any different than any other day?

We do this every day of our lives.  Sharing our story, showing our strength, being real about our concerns and trying the very best we can to make MPS a distant memory.  This is every day for us. Reflecting upon this last year, it's really had it's ups and downs and some challenges that looked insurmountable but proved in the end to be something we'd overcome. Something you may not see every day is how you make a difference in our lives and how powerful that really is; on this day let us show you the impact you've had on our lives.

You Follow Everyone

We cannot tell you how elated we are when we go to "like" another MPS family's Facebook page, website, tweet, update, blog, Instragram pic, etc. and we see your name listed there too.  We love when we see you've commented on someone else's page.  It warms our hearts to see you support not only us but the whole MPS community.  I know it means a lot to everyone.  Your support is powerful and meaningful to all of us. You never know when the person on the other end needs that boost or support. What you do may mean the world to them. Thank you for your support.

I look at our blog analytics often and it's really amazing how many people support us. I can also tell you that 1 "like" really means hundreds of people have seen your post, read it, or viewed your video. Those supporters may not feel comfortable liking it or weighing in on it, and some do. No matter what, these stories are reaching a lot of people.

We're so appreciative for this small, tight circle that keeps us going every day.

Your Words are Meaningful

The most moving thing about having a global community support us is what you say. Sometimes we are certain you don't know what to say because you just couldn't fathom what it's like to have MPS.  I think sometimes you are very intuitive about when we need support and when we don't. I (Amy) am personally moved by emails I get, texts or messages telling me that I am a good mother, I am so positive, I always find the silver lining, my strength is inspiring, I am so funny, people are lucky to have me, etc. I am not fishing for these comments.  I am being myself. I wish everyone could get this much encouragement in their own lives. People tell Dan he's an amazing Dad.  It's really a surreal situation. I truly believe you'd do the same given this situation.

You've Taken Action

We know how hard it is to give these days. Living is costly, making more is rare and still you find some funds to send our way or to another MPS fundraiser. Today I was sitting in our kitchen thinking of every person who donated to us. Friends, family, fro-workers (Friend Coworkers), teachers literally someone from many facets of our lives.  We cherish everything you send our way. Gene Therapy has to happen. The mountain of money, commitment, bravery, and support it's going to take to see it come to fruition is intimidating to say the least. It's going to take a cast iron stomach and the wallet of the world to make it happen.  It's possible though, and it's potential effects even more motivating and positive.  So that's all that matters.  Without fund raising and your support this wouldn't even be possible. Thank you. We've been coached before to not talk about the cost of things and exacerbate the money as an obstacle. The truth is...it is an obstacle.  One that needs focus to overcome. Ask yourself how much would you spend to save your life or the life of a loved one?

You've personally supported the National MPS Society, Raising Rare Boys, The Hunter Syndrome Foundation, or one of the other fundraising projects the other MPS families have launched.  Thank you so much.

You've colored for us. So many of you have sent us pictures for our kids and we love them!  They're a bright spot in our day and a visual show of support.

There are still so many of you who do not know how to help and there are many of you who want to do more. This year we'll do more but please know what you've done so far is amazing.

On this day of awareness, we want to sincerely thank you for being aware, for being with us, for helping us and being so committed to our family.

The Cherrstroms