Thankful

I am still on a bit of a high from our time with Sasha and her family.  It made me wish that I lived closer to other friends who have children with Sanfilippo.  In such a short period of time, we can form a deep connection.  Experiencing the devastation of a child's terminal diagnosis is (thankfully) very rare.  Then add the uniqueness of Sanfilippo and the progressive nature of the disease.  When you meet another mother who understands, you form an instant friendship.  And then there are those special moms who in addition to sharing the tragedy of MPS, you also share interests.  They have become such a vital source of support, encouragement and friendship.

I have recently connected with a mom who had a son pass away from Sanfilippo about 20 years ago.  When her son was diagnosed there was no MPS Society, no support forums or doctors with an understanding of the disease.  She went to her local library and had the librarian look up the specifics of Sanfilippo.  That was all she had.

I am thankful for my fellow MPS moms.  I am thankful for the MPS Society and the incredible resource they have been to us.  I am thankful for my friends and family who have been there for me in such tangible ways over the past few years.  Thanks to all of you for reading the blog and following our story.  I cannot even explain how encouraging your comments have been to me.  The blog is therapy for me.  It is also a way of telling Waverly & Oliver's story to the world.  It is my hope that their story has a positive impact on others.  I hope you can remember to celebrate the little things in life.