We are happy to report that MPS Awareness Day was a success.  We gave away about 400 ribbons and 300 lollipops.  We concentrated mostly on Waverly's school and Matt's office.  I hope to post some photos soon of Matt and his coworkers and Waverly's teachers.  Next year I hope will be able to do more to raise awareness.  It ended up being an emotional day for me.  I wish that I didn't have to know about MPS.  But I hope that through our small efforts, we can work towards finding a cure.  I just want to give future parents a sense of hope when a child is diagnosed with Sanfilippo, rather than a sense of helplessness.

We had a wonderful weekend.  We spent some time exploring Virginia and visiting a few local festivals.  The kids love the people, music and of course fair food.  Last night I had dinner with 2 very dear friends.  They both have a child with special needs and so there is such a sense of connection among us.  I love my time with them.

Today has been a difficult day.  There is a sweet little boy named Andrew who has Sanfilippo.  He is 11 and his body is just not able to fight anymore.  They believe it will only be a short time until he passes.  His mom has been a source of encouragement and information for me.  I see Oliver in Andrew.  Every time I hear about a child dying, I can't help but personalize it.  Say a prayer for Andrew and his lovely family today.


Anonymous said…
I have been following your blog for a bit and am so touched by your family. Last week I was on vacation in Ireland and heard an interview with a woman whose son has Sanfilppo. It was such a full cirle moment, sitting in a pub in Galway, telling people what I know about this disease, based on your blog, so that they could better understand her story.
Thank you.
Anonymous said…
I heard about your family by a flyer at Applebee's restaurant for support of the webpage fundraiser. I read all your posts and saw the videos of your son and daughter and they are so cute! My daughter is 4 and has a genetic disorder to which they have no name yet, she wears MAFO braces like Waverly and glasses too. She also has severe speech delay and "forgets," or has an "inability to" say words she used to be able to say.. its not Sanflippo, but by reading your words I find strength in what you write.
I really like the poem about the "trip to Holland" being like having a child with disabilities. It made me cry when I read it. Maybe you, Matt, and your children will be the ones to bring Sanfilippo to a place where more research will be done because you have the courage and willingness to share your lives with the world.
God Bless.

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